Brooke Marie Wallace: 2010

July 28, 2010
We thought we were having a month off...I called today to inquire specifically on Brooke's iron count. It is even higher than the one from two weeks ago. Now they are wanting me to give Brooke her Flintstone vitamin at night. They are thinking she is taking it early in the morning and her body is absorbing it and throwing the am labs off. So they want us to give at night for one week and try repeating labs in one week. So we truck back up to DC next week and please pray this works and her levels come back down. It is good her body is absorbing this so well but not good it is so high! (If this is the case why her iron levels are high??)

July 26, 2010
Brooke is doing pretty good. She still has some part of her cold left but fighting it. We will go to DC tomorrow to visit Miss Lorna and get labs repeated. They really want to double check this iron reading.
In two weeks, we will be taking Miss Brooke to David's Bridal to purchase a new dress for my nephew and his wife's wedding. We picked it out yesterday and are really excited! Here she is only two and in her second wedding! Little Miss Popular! I will post pictures at that point to show off my little Angel! Their wedding will be December 17th!! Congratulations David and MaryBeth!!!
My dad is inpatient and having difficulties with his breathing. He has stage 1 cancer in his lung and they are very happy they caught it so early and have a lot of hope to cure it. Right now he has COPD and that is getting worse. My dad was a smoker but quit 25 years ago but it still had an affect on his lungs. Please keep him in your prayers!

July 20, 2010
If I could please ask you to keep my dad in your prayers. Yesterday he was taking his physical therapy to build his lungs up for his surgery in August to remove the cancer and his EKG was abnormal and his heart rate. They wheeled him over to his sugeon who called his cardiologist but they must not have been in their office. Last night he seemed ok at home(Not sure why they didn't make him fo to the ER) but I am really worried about him and his heart and his cancer and he has another procedure tomorrow to check some lymphnodes. He could really use your prayers.
God is in control and I know first hand he only gives you what you can handle....my plate runneth over right now but I have to stay strong and rely on him. He knows best and what seems so bad right now and so overwelming in my life looking back later will seem so small.
Thank you for reading and keeping my family in your prayers!

July 19, 2010
Brooke now has a runny nose...actually running like a river clear but running and now yesterday afternoon has developed a cough. We will have to watch this cough as some of you know with her...can be pneumonia quickly! Otherwise, fever is gone and she seems good.

July 16, 2010
So Martha suggested us to go see our pediatrician on Wednesday. She was negative for the rapid strep and they are sending it out to be cultured.
We went to Georgetown on Thursday and had labs drawn and appointment with Dr. Kaufman. Labs were great and so was our appointment. Dr. Kaufman said she looked great and he thinks the fever was a virus. The fever is gone. Her iron came back with some funky numbers. We are not sure if this is an error or what is going on. Her iron usually is really low like 17, 22...they would like in the 30's...yesterday it was 104! So they are going to watch that and make sure nothing is going on. He did not feel her spleen during the examination which is great news...if he had there would have been some concern of a bleed possibly or the flow. Her prograf level was a little elevated last week so we are going to wait for that to come back and make a decision if we need to lower her meds.
Otherwise, Brooke sang to Martha, rubbed Dr. Kaufman's head and was a real trooper getting her labs drawn....she fussed at first before the needle even hit and then was fine. It has been a very busy week and I am just glad the weekend is here!
Martha called and said they are adjusting Brooke's Prograf medication. She will be going from .08 to .07. Her level was Prograf lab was 6.8 which is too high. They like it around 4 or 5. They want me to repeat labs in two weeks and they are going to check her iron levels too as this number stills has them concerned. Prayers this is not a bleed or blood flow problem. Her H&H labs were ok so I am hoping and praying this means no bleed!
So my worries continue with this little angel!

JULY 14, 2010
Brooke has another fever last night it was 99.1. I am trying to hold off because we go to Georgetown in the morning for labs and clinic. I am not sure if I am going to be able to do that though. She tells me I feel better but that is because she knows if she doesn't feel good we have to go see Lorna and the doctors....she is such a smart kid!
I will keep you posted on the status of what happens...please keep Brooke in your prayers. I guess I will call Martha, her transplant coordinator, and see what she suggest.

July 1, 2010
Brooke developed a fever on Tuesday night of 102. I was not too nervous as we just had labs done and liver was good. Yesterday morning I took Brooke to see our wonderful pediatrician, Dr. Richman, and guess what....Brooke tested positive for strep. I work for ENT doctors and the chances of getting strep after your tonsils have been removed are slim. Brooke just likes to rock our boat and keep us on our toes. However, like I told Bo, atleast it is something common and an easy fix and NOT her liver!!
I have to say, Brooke has never complained, fussed, cried nothing with this....her tolerance for pain must be high! She acted fine all morning long. Opened her mouth for Dr. Richman. When the nurse took the culture she didn't cry...she got her lollipop and kept on trucking! She is amazing! What a trooper I have....problem is I don't know when something is wrong unless there is a fever!!!

June 29, 2010
Brooke and I headed to DC yesterday morning with Nana and Chelsie. We got there to see Miss Lorna and Brooke was a trooper.....she fussed a little before the needle even came out of the package....Lorna hit the vein, of course on the first stick, and Brooke was fine. She got her lollipop and sticker along with a BIG hug for Lorna! She is such a great kid!
Martha called yesterday evening to say that Brooke's labs looked stable and great! We get another month off! Thank and praise the Lord she is finally getting to a stable place on this journey and doing so well. Thank you again for your prayers and please continue to keep our family in your prayers right now.

Daytona Beach Pictures
Here are a few pics that I was able to get downloaded....still have two other cameras to pull off of though!
My niece caught me and Brooke looking out at the ocean and me stealing a little kiss! =)

Miss Brooke being the mother hen taking care of baby Chase!
This is Chelsie, Brooke's big sissy. She turned 13 the day we got back from Daytona!
I got my toes in the water....
toes in the sand....
Not a worry in the world, a cold Mtn Dew in my hand!
Life is good today! Life is good!

Brooke again being a little mommy and feeding Chase his bottle!
This is Mary Beth and David. Brooke loved playing with them all week and of course they gave her lots of attention. My nephew is marrying Mary Beth next summer and guess who is going to be their little flower girl!
I am not sure what she was doing here in the pool...her poor little fountain hairdo is gone though!
We bought this tent while we were down there....We had to keep the babies safe from those bad UV rays! Brooke has to be very careful because she can develop skin cancer with her medication...I kept SPF 70 on her at all times and coated her throughout the day...she still has the coppertone baby tan going on. I guess she tanned right through it!

By the time we got to Florida she was ready to get out and was not happy...she slept all the way down!
So my brother, Uncle Randy, took care of that problem and got her out and took her to the BIG sandbox!

June 10, 2010
I apologize for not updating sooner but it has been a CRAZY week! With getting back from vacation, dealing with the news about my dad, my nephew, Corey and a special very lady to our family, Shelbylee, both graduating from high school, my dad having to go to the ER...this time his heart, Dustin and I catching a stomach bug...all I can say is WOW what a week!
With all that going on, Brooke did not make it for labs until Wednesday morning. However, it was worth the wait!!! Martha called and said Brooke's labs were really really good!!!! YEAH!! Even better we get a WHOLE month off! Her iron is still low....Dr. Kaufman wants her to take a Flintsone vitamin and try to eat a hamburger patty everyday! Flintstone vitamin ok...hamburger patty we will work on...she is a chicken girl not red meat so we are going to try this really hard to get her iron up. If you want to know why the iron supplements are not working, I have tried hiding it in her drink, food and just giving it to her. If you ask her this is literally what she will tell you..."I don't like my iron medicine....I spit it out!" She is too grown for her own good and cracks us up all the time!
Please keep my family in your prayers. My dad has several test lined up to see what exactly we are dealing with. We should know a lot more next week. Dr. Currie is very optimistic and thinks he can cure him. My dad needs to be positive and think the same and fight this....I told him Brooke is a fighter and look where she is today...she gets that fight from you Pappaw so you better show her that!
I know I have not posted pictures from Daytona....but honestly I have not even pulled the camera out from the camera bag since we got home....but it is on my list to do!

June 2, 2010
Vacation is over and we are back to reality. We went fo Brooke's labs yesterday and her Prograf was low. So guess what we increase her meds and repeat in one week! URGHHH! Oh well she got through vacation and loved the ocean and BIG sandbox!
It was so nice seeing her enjoying the beach and playing in the pool and other than giving her meds at 8am and 8pm...it felt so normal! I did not think I would ever get to this point. Yes we have a little hiccup this week...so we make an adjustment and then see what the following week brings us. Brooke is growing into one amazing, beautiful, little girl whom I am blessed and proud to be her mommy!
I will post pictures later this week of Brooke at the beach, pool and the BIG sand box!
On another note, my dad's results came back yesterday and he does have cancer. Please keep him and our family in your prayers. This is rough and a hard hit to our family but we are a strong close family and with God by our side as he always is, we will be ok, we just need your prayers.

May 21, 2010
OK, we leave for Daytona Beach, Florida tonight after Chelsie's softball game! Please keep us in your prayers and pray Brooke stays healthy while we are gone and enjoys her very first vacation!! I can not wait for her to see the sand and ocean and enjoy the week like she should!
Thanks to Aunt Jessica for giving her this opprtunity! There is not a day that goes by that I do not look at Brooke and thank God for giving her to us and Jessica for saving her life!! I see Brooke playing and laughing and being silly, wrestling with her brother, teasing her sister and sharing so much love with our family...something I do not take for granted and I say to God & Jessica...Thank you! I am so thankful for all the little things I see her experiencing....this trip is a huge milestone for Brooke!!
Please again, keep my dad in your prayers. He goes next Wednesday for a lung biopsy. It is killing me to not be here when he has this procedure. My family and my brother's family will be in Florida but he has 3 other sons and a daughter here that will take care of him...not to mention his AMAZING wife of 51 years! =) Love you mom and dad! I will miss you all...will be back Saturday with you guys!

May 18, 2010
For those of you who have been following and praying for Miss Harmonee....she received the call last night and is receiving a NEW PINK LIVER!! Please keep Harmonee and her family in your prayers!
Also, please keep the donor angel family in your prayers. This family has lost a loved one. I hope they will have peace knowing they have saved another!
http://www.harmoneesliver.blogspot.com/

May 17, 2010
Drum Roll Please.....Brooke's liver is happy and so are we!!! We received another 3 weeks off!!
We leave for Florida on Friday and do not have to worry about labs until we get back! Now we just pray that she behaves while we are away!
Please keep my dad in your prayers, the spot on his lung has grown and now they have to go in and do a biopsy and find out what it is.
Also wanted to share a picture of Miss Brooke from yesterday when she was all ready to go to church!

May 10, 2010
Brooke and I got up this morning at 4:00am and headed to DC. We were at Georgetown by 6:15 and getting her labs drawn by 6:55am. Lab does not open til 7:00....but she spotted her Miss Lorna and to the back she went! She missed Lorna, not the poke, but Miss Lorna she did miss.
The results of Brooke's labs... look good!! We of course have to wait for her EBV results to come back, probably Thursday, to see when we go back to have them repeated. Prayers we get another three weeks off!!
We leave next Friday for Florida. My brother and his family invited us to their time share in Daytona Beach. We were able to get two condos and I can not wait!! Prayers we have a safe trip, Brooke stays healthy, and no visits or calls to ANY doctors or hospitals!!
I will update the end of the week with her EBV results.
Here are some picture from yesterday...

May 7, 2010
Brooke is due for labs next week...what a quick three weeks!!
With that being said, Brooke is fighting either a cold or allergies...her nose is running like a river but clear and she said her eyes hurt. Her ear started draining and now that she has tubes, we took her to see the wonderful ENT doctors I work for, Dr. Franz, and she has an ear infection and had to be put on drops.
I have to say these liver babies/kiddos have such a high tolerance for pain! She does not let it bother her or stop her...she just keeps going with the flow. She went to sissy's softball game and played with her best buddy, Emma!
I will let you know how labs go next week...OH I must add....Brooke has had ZERO accidents all week! She even stays dry at night!!! WOOHOO Go Brookie...no more diapers...LOVE IT!!!

May 5, 2010

NEED PRAYER WARRIORS!!!
Another precious little girl, Harmonee Lynn, and her family could use your prayers! Harmonee is a little girl who was born with biliary atresia. She is in need of a transplant. However, she is having some complications right now and her little body can not go through one at this point. Please pray that God will heal this little body so she can be transplanted and move on down this journey!
Here is a link to her website and picture of this beautiful little girl!
http://www.harmoneesliver.blogspot.com/
Fight Baby Girl Fight!

April 28, 2010
Even though Brooke has three weeks off from labs I still want to update on her. Brooke is doing GREAT!! I am so happy to report how well she is doing. Brooke's vocabulary and sentencing is awesome...everyone comments on how well she talks and how well they understand what she is saying. Also, I MUST add and say Brooke is officially potty trained! She went all day yesterday with NO accidents!! We were even at the ballfield for Chelsie's school game from 4:30 to 6:00(they won!!) and then Dustin's game from 6:00 to 8:30(they won too) and she went potty there twice! I am so proud of her! (Thanks to Chelsie and her best friend Jamie for taking her in the woods ) Little country girl for sure!
An update on Xander, thank you so much for the prayers! I am excited to report that his EBV numbers are now 300!!!! WOOHOOO Way to go Xander! He still is fighting some other things but his labs are looking really good so please keep the prayers coming!
Also, if you could keep my dad in your prayers. He had a biopsy done for a spot on his lung and he goes tomorrow to hopefully find out the results. Please pray that is is scar tissue from his pneumonia and not cancer.

April 22, 2010
Please keep the Guffy family in your prayers today. They got "THE CALL" and Jax will be receiving the gift of life! He has been on the waiting list for 10 weeks. Please keep this family in your prayers...a very exciting day and at the same time very scarey!
With that being said, please know for Jax to be able to get this gift another family has lost a loved one and needs our prayers too! So please keep the organ donor's family in your prayers also!
His story can be followed at... http://www.caringbridge.org/visit/jaxguffey/journal

April 21, 2010

I am asking for some BIG prayers again!
I am asking that you keep Xander Colby in your prayers! He is fighting this NASTY EBV like Brooke and some other things. I know alot of you follow this precious little guy and have since I requested your prayers when he had his transplant a week after Brooke. His family and I thank you for your prayers and support!
This family is amazing and I am so blessed to have a part of my life. Blair has been VERY supportive and so understanding and truly knows what I am going through. As each of you pray, support, love, listen, and give so much to me and my family it is so nice to have someone who truly "GETS IT"!! We get excited over the smallest milestones that so many take for granted and she truly is an awesome mom!
Thank you VERY much for keeping Xander in your prayers and please while you are praying for him keep his family in your prayers too. This journey is a HARD one with lots of bumps and obstacles. It is so hard on the parents, not knowing and the stress of so many things! We can do it, we just need prayers and support!
Blair, my prayers are with you everyday! God is good and he answers prayers! Xander will overcome all these things and be back to his self again soon! I just know it!! Hang in there and know if you need anything I am here....we might be further than before but I am here no matter the time or moment!! Alot of prayers are going up!! HUGS!!!
You can follow Xander's journey by visiting http://www.colbykids.blogspot.com/.
Thank you for your prayers and support!

April 20, 2010
Brooke went to Georgetown this am to see Miss Lorna. Her labs drawn and now we wait for results. She was complaining last night with tears in her eyes that her ear hurt and again this morning she said it still hurt. I work for a GREAT ENT group so on the way back I had her ears checked out by Dr. Franz. He said her tubes were intact and nothing looked out of the ordinary. No drainage and no problems with nose or throat. I am not sure what that was about because she never cries in pain and she did yesterday...very odd!
I will post when I hear back from labs.
As Martha said to me...brace yourself...Brooke's labs were so good we get the next three weeks off! YEAHH!!! First time ever and she is now 1 and 1/2 years post transplant!! Thank you for your prayers and support! This is the best news we have had in quite sometime!!! God is Good!

April 12, 2010
My apologies for not posting for awhile. Mommy had to take some time and relieve some of this stress. My birthday was yesterday and some great friends and I went to Ocean City and had a great time!!
Georgetown did not call Bo, so I called and Martha did not have the results. She called Pittsburgh and called me right back to say Brooke's EBV levels are stable!! She said they are at 400 where they have been since last summer, which is GREAT news! I wish they were lower but I will take them being stable! Keep the prayers coming for Miss Brooke and our family!
Thanks for all your support!

April 7, 2010
Brooke is enjoying this beautiful weather so much! She loves going outside and playing in the sandbox, swinging, and the sliding board. Here is a picture from last night that I had to share with you guys!

April 6, 2010
Brooke and I headed to DC today to see Miss Lorna! Brooke was not very happy today and cried...Miss. Lorna had to poke her twice and Brooke was not happy! She said don't hurt me again! Then of course, when she was done she gave her a BIG hug and got a lollipop. She told them thank you and have a good day. Then off to McDonald's and back to Fredericksburg to meet my mom.
Her labs all looked good. Some of her liver tests came back slightly elevated but Martha(TC) said that could be because of her cold/virus she is fighting. Her Prograf level will be back sometime this afternoon and PRAYERS PLEASE the EBV will be back on Friday.
Here are a few pictures from our Easter...my camera broke so thanks to Aunt Jessica she forwarded these to me to post on her site to share with you! (When I get more from other cameras I will share)

Brooke with her "LIFESAVOR" Aunt Jessica. Jessica is the one who gave a portion of her liver to Brooke and saved her life!

Brooke done spotted an egg and going full throttle ahead to get it!
Brooke's cousin, Devon, had to help her get this one down...she spotted it before everyone else but couldn't reach it...she kept pointing saying there one!

April 5, 2010
OK...you will never guess...results unamplifiable once again. So we were told we have to come up there again tomorrow and try again!! This is so frustrating. Martha (TC) apologized but it is clotting by the time it gets to Pittsburgh. I think I am going to take a road trip next week to Pittsburgh if it happens again! This is so working on my nerves!! Prayers for both Brooke and I!!

April 2, 2010
I called and spoke to Martha, we are still waiting on the results from Pittsburgh. They are not back as of this morning. She said she would call them and then call me later this afternoon. Praying the results come back with a reading and that they are good!

Special Prayer Request!!!!
One of the little girls from my support group is not doing really well right now and could use your prayers! Please Please Please pray for this precious, beautiful, little girl, Ayanna and her dear family! My heart aches and goes out to this family!
You can visit her site and leave the family encouraging words and prayers!
http://www.caringbridge.org/visit/ayanna07
Maggie & Albert know I am praying for your little princess and you guys! Ayanna is an amazing little girl with ALOT of fight !(These transplant babies/kids prove that time and time again!)
Lots of Prayers going up!

April 1, 2010...Organ Donation Awareness Month...
April is National Organ Donation Awareness Month!!
The need is constantly growing for organ donors and it is very simple to be an organ donor when you die.
As you know, Brooke was born with a very rare liver disease, biliary atresia. This put our family in a position where organ donation became personal! At the age of 6 months she was put on the waiting list to have a liver transplant. We received a call but unfortunately it ended up not being a perfect match for her. Fortunately, for us, Georgetown University offered a living donor program. This allowed Jessica, Brooke’s aunt, to be tested and she was able to give a small part of her liver to Brooke and save her life! Our story had a happy ending but so many do not.
People around the world, both young and old need organ transplants. They need our help! A new name is added to the waiting list every 16 minutes!
Organ donation is so important! I found this poem “To Remember Me”, by Robert Test that shows the importance…
"Give my sight to the man who has never seen a sunrise, a baby’s face or love in the eyes of a woman. Give my heart to a person whose heart has caused nothing but endless days of pain… Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk…Take my cells, if necessary, and let them grow so that, someday, a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window.”
According to UNOS, United Network for Organ Sharing, 106,729 people are waiting for transplants! Of that 2,773 are from the Virginia area. Now you can see the need for organ donation right here in our back yard!
This is what we need to do…make your family aware of your wishes to donate. If they do not know, your wishes may never be carried out. Mark your driver’s license so that your license indicates your intent to donate. Fill out, sign and carry a uniform donor card with you.
Once you choose to become an organ donor not only does it have an impact on the recipient and their family but it truly does on the donor’s family too. Knowing that your loved one can give someone who has never been able to see…vision, or someone who has never been able to hear…sound, or a mother who is on dialysis…kidneys, a baby fighting for life…a new liver, is so priceless and rewarding!
As you can easily see, donating your organs can be one of the most important decisions you ever make and also the greatest gift you could ever give. Just imagine the person waiting on the list needing an organ transplant was someone you loved? Imagine if you had a loved one who had unexpectedly died and you were able to meet the person who received their heart, for example. Think of the satisfaction and possible comfort knowing that your loved one provided life for somebody else.
Please be an organ donor and sign up today! You can click on organ donation tab at the top and links are there for you to sign up! It is the best and most rewarding decision you will ever make!
Be a blood and organ donor. All it costs is a little love. ~Author Unknown
Thanks Jessica for being our organ donor and saving Brooke’s life! You are amazing and we love you!!

March 31, 2010
Martha called yesterday and Brooke's labs all came back good. She is running a level for her Prograf(anti-rejection med) of 2.5. This is REALLY low but they are trying to drop it to get Brooke's body to fight this EBV off. So now they are going to have to watch her liver functions and make sure she doesn't start to reject her liver.
When I inquired about Brooke's tonsil pathology and the letter that went out to the doctors she said the transplant team has team meetings on Wednesday mornings and they were going to bring Brooke's case up to discuss. She said they have done everything they can to get this EBV to go away...drop immunosuppressant, remove tonsils...monitoring weekly. So they are going to see if the team has any suggestions or want to intervene. Martha said she would call me as soon as she knew what the plan was.
I know the EBV that went to Pittsburgh will not be back til Friday so I am not sure if they will await those results before making another decision or not. I guess we do what I HATE most...WAIT! (I guess I need to search that silver lining)

"Being beaten is often a temporary condition, giving up is what makes itpermanent"
So I am at a low...I knew and still know there are going to be days like this. This journey with Brooke is not easy and not going to get easier. One would think, and I included, once we jumped over that HUGE hurdle of transplantation things would smooth out and be alot easier for Brooke and our family for that matter! Not the case!
I received a letter in the mail that went to Brooke's doctors outside of Georgetown... her pediatrician...her first GI doctor at INOVA who first diagnosed her...and Johns Hopkins GI. So I have not talked to her team but I was not happy with what I read. Of course I am not a doctor and I do not know truly what I was reading but PTLD (Post-transplant lymphoproliferative disorder) was mentioned and it may be very early stages of this. This is not confirmed and I do not know the treatment. Sometimes just the drop of the immunosupression drug can make this go away...but of course we worry about rejection! Again, I know I am jumping the gun and should not be going off this letter and wait and talk to her team, but after reading it last night I could not sleep and have a nasty feeling in my gut!
I am axiously waiting now with Georgetown for Pittsburgh's lab results...which again will be back this Friday. This is way tooooo long for a mother to have to wait! My nerves are already shot!
As my quote states above....this is truly beating me up emotionally! However, I can not and will not give up! Brooke is one tough little girl who has taught me so much and as hard as it gets for me I have to dig deep for strength to keep moving ahead!
I ran across these tips to help me get through the lows of our transplant journey...hopefully I can live by these each and everyday no matter how hard it gets! Let me start by saying my first lifeline is PRAYER! There is no way I would be where I am now without God by my side! Prayers definetly changes things! God is good and even though we are dealing with another hurdle to this journey he is still good to me and by myside each step I take!!
LEARN TO GO WITH THE FLOW: This is where I am at...trying to just go with the flow. I realize that you are never prepared for serious illness with your child. Everything is going to change--repeated visits to the doctor and hospital, physical and occupational therapy, multiple meetings, etc.
YOU ARE NOT BEING PUNISHED: Having a sick child is a difficult test. God is not punishing me, I believe he is better and so much more beautiful than that. I feel he gives you trials in life to make you a better person. This is HUGE trial, one that has already taught me so much. God gives special kids, like Brooke, to parents and families that are strong and strong to his convictions! He is never going to leave me, he is on this journey with me and I KNOW that!
LEAN ON GOD AND PRAYER: Prayer is POWERFUL!! I may not understand why things are happening the way they are, but God has a reason. So praying and asking others to pray for Brooke gives me a sense of comfort! God is listening and he loves for us to turn to him in prayer! So please keep Brooke and my family in your prayers each and every day!
LEAN ON FAMILY AND FRIENDS: WOW, another reason I am where I am today! I have an amazing support group behind me! I have so many family members and friends who are there for me at the drop of a hat! They have been from day one and still there! If I needed anyone in the middle of the night to just listen to me rant and rave, cry on their shoulder, tell me it is going to be ok...I know without a doubt I can call them and they would be there! I have so many friends even through this journey that are there for me and am blessed to have them apart ofmy life now!
GIVE ATTENTION TO THE SIBLINGS: This is where I have SOOO much trouble! Not that I don't show my other two attention and make over them. Just when I am inpatient with Brooke, I have a really hard time wanting to be at both places at the same time! I don't ever want Chelsie and Dustin to ever feel I only have time for Brooke or all my attention is towards her. (Why I live at the ball fields now..Chelsie playing school, travel and little league softball and Dustin playing little league baseball) I am NEVER home! =)
ALWAYS SEARCH FOR AND FIND THE SILVER LINING: Whenever it seems the dark clouds are gathering, obliterating hope, try to look for the silver linings. They're always there, lighting our way. When Brooke was first diagnosed I was always scared with every little symptom she had...oh no a fever, runny nose, she is more jaundaced, vomitting...I would panick wondering how far in the future was the HORRIBLE word transplant! Now that it is behind us, it doesn't seem like it was so horible. So now with whatever God brings to me on this journey I have to look for the silver lining! Hard...yes but to remain sane it is what I HAVE to do!

March 29, 2010
Martha called us and stated the labs that they sent to Pittsburgh were unamplifiable! URGHHH meaning they could not get a reading. How frustrating....I have been anxiously waiting for these labs and praying the results would be good and now we have to wait yet another week!
However, the Quest labs that were sent out did come back. This is the lab that was sent out the day after her tonsillectomy that the readings came back 179,000. The good news is they read 43,000. The bad news, Georgetown does not trust this lab like they do Pittsburgh.
So we head up to DC tomorrow morning for our postoperative visit with Dr. Harley and repeat labs!

March 24, 2010
Brooke's transplant coordinator called and Brooke's labs look good. However, her EBV lab is still pending and we should hear something Friday. Her liver is VERY HAPPY! Her level for her prograf(anti-rejection medication) is 3.5. They are going to try to lower it just a bit to see if her EBV numbers will decrease. She was on a .07 dose in am and .06 in pm. Now both doses are going to be .06. I am still praying that Fridays labs that will be coming from the Pittsburgh lab(specializes in EBV) will be drastically lower now that her tonsils are out! Please continue to pray with me this is the case! God is good and he can do anything!

March 23, 2010
We found out late last night that Dr. Little wanted to see Brooke after her labs today. Lorna was not there today, she is not feeling well. Please say an extra prayer that she is feeling better soon. Get Well Soon Lorna! So Brooke got to see Miss Beverly. Brooke fussed a little but still did a great job!
So here is where we are right now....Brooke's EBV level pre tonsillectomy was 110,000 post tonsillectomy 179,000. NOT GOOD! Her levels are still climbing. Her biopsy of her tonsils did show positive EBV levels but the markers did not show into her lymphocytes...which is good! They are anxiously waiting for labs to come back from Pittsburgh...hopefully by Friday they will be back and PLEASE PRAY PRAY PRAY PRAY these EBV numbers have come down!
Dr. Little and Dr. Matsumoto were talking with me in the hall and they have been discussing Brooke's situation....he did say he hopes they are overly concerned and all is ok BUT it has them quite worried! Again, I ask you to please pray all is ok and these numbers come down! We all know this is truly in God's hands and a part of His plan but I just pray that this EBV is NOT somewhere else in her body!!!!!
When I first started this journey, I truly thought once I got Brooke through her transplant I could handle anything that crossed my path! I have been trying to be so strong and so positive with every hurdle that has been thrown at me. This is one that is going to be the most challenging and test me the hardest! I have a lump in my throat right now and truly SCARED!! I know this is all in God's hands and I just need a little time to cope and let it sink in and give my worries to him. Who knows, Friday may come and her EBV has dropped! I can only pray that this is the case! Please keep Miss Brooke in your prayers and myself also! I just wish this journey would smooth out and give my baby girl a break! She is one tough cookie and I pray God allows this EBV to GO AWAY!!!
I will definetly keep you up to date on any news we may receive back from Georgetown. I know she is in the BEST hands right now...she just needs LOTS of prayers!! God is good and has shown that to us time and time again! He can do anything!
PRAYERS is what we ask right now!

March 20, 2010
Brooke is doing really great! Her appetite finally came back yesterday! She has been drinking really good but not eating. Yesterday she was making up for it...she had oatmeal prior to her medication, then at 9:30 when I cooked breakfast for all of us she ate french toast and bacon, then she ate a peanut butter and jelly sandwich and then goldfish snacks, then for dinner pork chop, corn on the cob and mashed potatoes and gravy! Then I saw her munching on some cookies! She is definetly feeling much better!
We go back for labs tomorrow morning. Prayers for Miss Brooke!

March 16, 2010
Sorry for the late update...we left so early on Sunday I did not have time to update. Brooke has been very clingy and I have been SO focused on her drinking I have had NO time to update! I took a moment at my best friends house to breathe a little while she holds her to type a quick update. She is really doing great! She rebounds so quick.
First, let me thank each and everyone one of you for your thoughts and prayers! Secondly, let me say Georgetown tranplant was AWESOME!!! They are the best and really and truly care about us and Brooke! We love you guys and are so blessed to have you take care of our precious little girl! We truly miss you when we are away...don't get me wrong we like our time away but do miss you guys. Each time we come back you make us feel special!
Pretty much we are just healing. Please keep Brooke in your prayers! We love you all!

March 13, 2010
8:30pm...Brooke received some Tylenol instead of the Oxycodone and she is doing MUCH better drinking some and playing more! It is so nice to see her feeling alot better! I think she was waiting on her night nurses to come in to see them her! =) They are brining her a chocolate milkshake when her hour is up from her Prograf dose!!
Brooke wants to send a message....
ggggggggttt
tttttttttttttttttttttttttttuuuuuuuuuuuuuuuuuuuunnnnnbnhl,,,,,,,,,,,,,,,,,,,,,
,,,,,,,,,,,,,,,,,,,,,,mb ghmjmjk;hnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnn
( I think she says...thank you for your prayes and she loves you all! xoxoxo)
5:30pm....Still no drinking....discharge papers written and all ready for us to go home. Once again, Brooke says who is running this show! Waiting on her....we might just be here for awhile!
Brooke is in some pain today. She says her mouth hurts and sticks out her tongue. She won't eat or drink anything and cries out alot when she is trying to sleep. They took her off IV fluids hoping this will help her want to drink and eat...o luck so far.
The only way I got her to take 3 sips and I mean sips was to bribe her to go see the fish!

March 12, 2010
7:25pm Brooke is laying on my lap....Her oxygen is staying in the 99 range with no assistance. She has been drinking from her cup, talking, laughing and still going in and out of her naps.
4:07pm We are up here with our best friends (C51-The Transplant Unit here at Georgetown) She is doing alot better. They had to bring her up here on oxygen...in recovery it was dropping down to the 80s. We just took it off her to see what she would do and...Thank the Lord it is remaining 98 99 and 100!!
She is not screaming out as much as she was but she is still knocked out pretty good. She hasn't talked really or sat up. She is just laying in her daddy's arms!
Dr. Kaufman came in and said she sounded clear. She broke out in a rash and they do not know if that was coming from anesthesia or the morphine....it looks like it is fading now.
Thanks for your support and prayers! I will update with more news later! Here are some pictures from today......
We got to DC an hour early so we decided to go see Lorna! She is who we talk about every week when Miss Brooke has to go get labs done. She is the best lady you will ever meet! Brooke truly loves her! She has been with us on this journey since Brooke was 6 months old!
Amanda came with us! It was so nice to have her here with us! Especially for Brooke....while we spoke to doctors,Brooke had her playing with toys!
Brooke modeling her hospital gown! All ready to go for surgery! Check out her Pebble's hair going on...finally she has some hair to put up!!
Daddy getting ready to take me to the OR. Mommy did it when I had my very first surgery...it was daddy's turn!!
We made it to the Transplant floor and we had a Welcome message from the BEST nurses EVER!!! I tell you guys time and time again, these nurses care so much and are truly amazing!!! Laura was here to bring scooby doo movies too!! =)

Brooke back from surgery laying on daddy...getting some oxygen.
Mommy and Brooke snuggling....

We got up here to Georgetown at 8:00am....they changed the surgery time to 11am so we didn't have to be here until 9am. We had an hour to kill so we went to tell Miss Lorna hello. I will post a beautiful picture of them two later.
After that we headed to registration and then to the surgery waiting area. Everything was so quick. Daddy took her back to the operating room and had to watch her being put under....I did for the Kasai, so it was his turn. Amanda, my niece, came with us and kept me company....we are waiting now while Daddy is in receovery with her....I didn't know whoever took her in for the operation would get to go back to the receovery room!! URGHHH!!!! But, Amanda and I are hanging out in the waiting room waiting from Brooke to get her room on the transplant floor!
She did GREAT and the nurse came in to tell us she is snuggled in her daddy's arms smiling. How PRECIOUS! She is such a trooper! Thank you for your continued prayers!!
I will post pictures and keep you posted on her progress!

March 11, 2010
Brooke's surgery will be tomorrow at 10:00am. We have to be at Georgetown by 8:00am.

March 10, 2010
Looks like Brooke's surgery is scheduled for Friday, March 12th. We do not have a time yet. Brooke is on antibiotics for an ear infection and now she has started to cough. Please pray this will go away by Friday and she will be able to have the surgery. No fevers! I will keep you updated as I receive more information. Thanks for your prayers!

March 9, 2010
So it looks like Brooke will not be having her surgery on Friday. For whatever reason there was MUCH confusion and they wanted Brooke to have her surgery Monday....yesterday!! Nobody got back with me on Friday afternoon so I didn't go up. Now since they took her off the schedule for Friday (without my permission) she can't be put back on!! So Dr. Harley's office called me last night and they will try to get her on for Thursday, if not it will have to be the 19th.
She is suppose to call me this morning and let me know....I will post later today to let you know what is going on.

March 5, 2010
Dr. Harley's assistant called me today and Brooke's surgery is scheduled for Friday, March 12th. For now the tentative time is 12:10pm. She can not have anything to eat or drink after midnight!! I am hoping when the surgery department calls that they will be able to bumb her surgery up to earlier! So yes we have to go to DC next week for labs!! I told you that would be our luck!! Prayers for Brooke please!

March 3, 2010
Brooke and I, persuaded Nanna to go with us to DC yesterday so we could get in the HOV lane coming home. Brooke's appointment was at 3:20pm at Georgetown! Dr. Harley and his staff were great! Brooke's tonsils are 4+...almost kissing! She had some fluid in her right ear so the decision...tonsil and adenoidectomy. They have to get clearance from the transplant team so we decided we would go talk to Martha and get things started sooner than later. We went upstairs to clinic and guess who was coming out of the exam room...yes Dr. Kaufman! He said is that Brooke Wallace?!?! He came over to her and she was smiling ear to ear! She opened her mouth for him to look(it was too dark). I said she was asking about you the other day...he said he had heard and asked Brooke, what is my name...she said Kaufman and gave the sweetest smile! So he said they have clearance through them to go ahead with surgery. He said I will go call them now.
Brooke's labs this week were good and bought us a week off! YEAH!! But watch with our luck we will have to go to DC next week to get pre operative labs anyway! She will have to stay over night for atleast a day and a half. Dr. Harley said it really depends on her toleration of the surgery and pain and her intake of fluids. The transplant team may decide to keep her longer. I told him...when they get Brooke on that floor they don't like to let her go and we spend WEEKS there! I made sure that we would be on the transplant floor and Dr. Harley said yes, they know us there and will be able to monitor her closely! YEAH!! Hope we get to see all Brooke's favorite nurses!! They truly are the BEST!! Not sure if Brooke likes it there or the WONDERFUL nurses want to keep her!!
Once I get the actual surgery date and details, I will let you know. Thanks for your prayers!

Brooke's 2nd Birthday
Brooke's birthday was a BIG success! She is SO loved! Here are the promised pictures...we turned our garage into an under-the-sea ADVENTURE and she was the PRINCESS MERMAID!

EBV Status...
Martha called and stated that Brooke's EBV levels are stable at 400 where they have been since summer. However, with her symptoms Dr. Little wants to be proactive and get us in with the ENT before our scheduled appt on 3/16/2010. We now have an appt on Tuesday, March 2nd with Dr. Harley for another evaluation. They are really watching these EBV levels because it can turn into blood cancer and then we have other issues! If the EBV is storing itself in the tonsils, and they get removed, we can only PRAY that the EBV will go away! So Bo will be taking Brooke to DC for labs Monday and I will be taking her up on Tuesday for her appt. Please keep Brooke and this situation in your prayers and as soon as I know more I will update and let you know. Her levels are stable right now which is GREAT! So we leave it in God's hands.
For now I have a birthday party to get ready for!!! We are going UNDER the SEA for a Birthday adventure. Brooke is O-FISH-ALLY turning 2 tomorrow!!! I will be sure to post pictures of her birthday as soon as possible!

February 26, 2010
Let me start by saying I can NOT believe my little girl is going to be 2 tomorow! What we have lived and CONQUERED in the past two years is AMAZING! When you think of someone turning two, you think independant, busy, wonderful then the dreaded terrible twos! But with Brooke, like I have said from the beginning, is different! Don't get me wrong she IS idependant, she IS busy, she IS wonderful, and yes SASSY! But she is so much more, showed us so much, taught us so much...she is high spirited, strong, lively, vibrant....she truly is a GIFT from God! It is astonishing what is inside that little body of hers!
Two years ago, I was totally a different person, a different mom, a different wife. Not by any means a bad mom or wife but living what we have lived, you truly do look at this world in a whole different way! Brooke's fight she has deep inside, and seeing what she has to live each and every day gives me SO much HOPE and LOVE inside! She still walks away with a smile on her face, an I love you very much from her mouth, a hug bigger than the world, and keeps walking to the beat of her own drum! She truly is a VERY SPECIAL LITTLE TWO YEAR OLD GIRL!
HAPPY BIRTHDAY BROOKE! YOU ARE QUITE AN INSPIRATION TO ME AT THE YOUNG AGE OF TWO! I LOVE YOU AND WISH YOU MANY HEALTHY AND HAPPY BIRTHDAYS!!
P.S. Got to share this...It was 7:55pm, Brooke gets her anti-rejection medication at 8:00am and 8:00pm, so I went ahead and gave it to her 5 minutes early. Brooke's daddy comes inside and his alarm on his phone goes off. I am in the bedroom and I hear him say....Brooke medicine time. Then I hear her hollar from the livingroom, I already take it daddy! It was precious and priceless! Got to love this kiddo!

February 22, 2010
Brooke and I took our trip to DC this morning. We got Brooke's labs done and then we got to see Dr. Little. When we were in the examination room and the transplant coordinator came in....Brooke asked where is Kaufman? It was very cute she usually sees him so she didn't understand. Dr. Little is a great doctor too and she said she would be sure to let Dr. Kaufman know that Brooke asked for him...that would make his day! =)
Dr. Little examined Brooke and said yes her tonsils were enlarged and that she was going to refer us back to the ENT doctor at Georgetown. We saw him (Dr. Harley)O before but her numbers (EBV) were not elevated she had no snoring and they really don't like to take tonsils out before the age of 2. So now her numbers are elevated she is snoring and she will be two on Saturday. Out appointment with Dr. Harley is on March 16th.
Her labs today are being sent to both Chantilly and Pittsburgh. They are going to compare the results and see what her numbers are this week. Again, they are very happy with her liver numbers and stated they are really good. Brooke could really use your prayers concerning this EBV, her tonsils and mommy too! =)
We should hear from Martha today or tomorrow so I will update when I know more. Thanks for checking in and keeping our family in your prayers!

February 18, 2010
Brooke's labs are back and her liver is very happy. Her Prograf was high so they knocked that down some and we repeat labs next week. With that being said, her EBV is questionable. Her numbers are elevated but staying at the same point. They want us to have the labs done next week and they are sending them to Pittsburgh where they specialize in EBV. We also have to see the doctor next week. When Brooke was admitted in August for elevated numbers she had to see an ENT doctor. Her tonsils were large and sometimes the EBV will collect there. They talked about removing them but they do not like to before they are 2. She didn't show any signs or symptoms so we were told to watch. Brooke has started to snore which is a little concerning to her transplant team. So they want to see her and take a look at her and see what might be going on. Please keep Brooke in your prayers! Sometimes if they remove the tonsils the EBV will go away!!! PRAYERS this may be the case! I talk about this EBV on here quite a bit so here is a little information on it....
EBV is the short name for Epstein-Barr Virus infection, also called Mononucleosis, "Mono," and the "kissing disease." This virus is a member of the family of Herpes viruses that includes Herpes Simplex, which causes "cold sores" on the lips and mouth as well as genital Herpes; Herpes Zoster which causes Chicken Pox and Shingles; and CMV or cytomegalovirus, a virus that commonly infects post-transplant patients.
About 85% of adult Americans will test "positive" for EBV antibodies, which means they have been exposed to the disease in the past. All of the diseases in the Herpes family share the common element that the infection can occur multiple times. This process is called "reactivation." It happens because the body doesn’t really eliminate the virus; rather the virus becomes dormant in cells, only to reemerge at a later date. Since the virus is not eliminated, organs from anyone who has ever been exposed to EBV can transmit the virus to the recipient.
So to answer your question truthfully, the concern about EBV persists indefinitely. About one half to two thirds of EBV infections are in the first year and the rest occur after the first year.
At present, the major concern regarding EBV infection is that it may later develop into lymphoproliferative disease (LPD), which is a malignant condition (cancer). However, the virus also may be responsible for chronic fatigue in transplant and healthy patients, and occasionally it can cause hepatitis and damage the liver.
In four recent studies that looked at EBV infection in liver recipients, the incidence of EBV infection was between 4 and 20%.
The major risk factor that seemed to increase the chance of getting EBV was having treatment for rejection with immunosuppressive antibodies, such as OKT3 and ATGAM. Also, the younger groups seem to have the highest risk. Finally, there seems to be more EBV infection in children treated with tacrolimus (Prograf) compared to cyclosporine; however, most patients who were treated with tacrolimus had a higher dosage than is currently in use. This may explain the higher incidence of EBV infection.
It is unclear whether prophylactic treatment with anti-viral drugs, such as ganciclovir and acyclovir, decreases the risks of getting an EBV infection or not.
Warning signs of EBV infection include an unexplained fever, lethargy and fatigue, and swelling of lymph node tissue. Lymph nodes are normal collection of immune cells that fight infections. The lymph node "lumps" are most noticeable in the groin area, under the arm pit, and in the neck. Enlargement of these nodes happens normally to fight infection. For example, the nodes in the neck under the jaw will swell when one has a sore throat. If the swelling does not resolve when the sore throat does, this is cause for concern.
Diagnosis of an EBV infection can be difficult. The most commonly used method of diagnosing EBV is by monitoring for the presence of an antibody reaction to the virus. However, this test may not be positive early in an infection, and it may remain positive long after eradication of the virus.
In many cases it appears that EBV infection can be controlled with anti-viral therapy and a concomitant reduction in immunosuppression. But because it is hard to tell who has EBV and who doesn’t, it is hard to measure for sure the effectiveness of the anti-viral therapy.
Between one and two thirds of patients who develop EBV infection will develop lymphoproliferative disease (LPD). Treatment for LPD is not very effective and it is fatal in between 40% and 80% of cases. The thing about LPD is that most people don’t think of it as an infection but as a situation where the patient is or has been "over-immunosuppressed." The best way to prevent LPD may be to avoid "over-immunosuppression."

February 16, 2010
It has been awhile since I have updated....Brooke's liver labs have been stable...however, her Prograf was low last week and her EBV elevated so we have to repeat this week. Yesterday was a holiday and snow today so we will try to get her to DC tomorrow morning! I am SO DONE with this SNOW!!! We have been snowed in lost power and really made some memories this winter!!
Brooke is really something else! She is talking with her hands she repeats EVERYTHING!! She is sassy but so LOVING!! When she says or does something she knows she is not suppose to do; immediatly after she comes running I love you very much! It is hard sometimes to keep a straight face and still discipline her! But I refuse to raise a brat so I tucker down against so many people's wishes who get upset with me and say she has been through enough and tell me I shouldn't but I correct her anyway!!
Brooke will be celebrating her 2nd birthday on February 27th and I can not believe it! Time has zoomed by! She truly is a blessing and each day I look into her beautiful eyes I see God's work and the miracle he gave me! There is NOT a day that goes by that I do not thank Him and know she is all a product of His work and love! God is truly good!
So her birthday theme last year was Princess...for the little princess she is! This year the love of fish that she has, we are doing an Under-The-Sea adventure! Ever since her admissions to Georgetown and the fish they have on the floor, she has grown to LOVE them!! Know something ironic..her transplant surgeon..Dr. Fishbein! Too cute! Anyway, I am having so much fun planning for her birthday and her turning the BIG 2!! (Not looking forward to the terrible twos though!)
Thanks for your love, prayers and support! I will let you know when labs come back and how her EBV is looking! I really hate EBV one word I can truly say I HATE!! So pray for that situation and until next time stay warm and have a blessed day!

January 27, 2010
Martha called and said that Brooke's labs were stable and depending on her EBV results we may get next Monday off. Her EBV levels last week were slightly and she stressed slightly up. Prayers that these numbers go back down or remain stable.
It is so hard to believe she is going to be 2 in one month! WOW time sure has flown by! She is working on potty training and is VERY sassy! I hope the title TERRIBLE TWOS does not apply to her! I know my other two it was the 3's not 2's!! She is trying me ALOT and seeing how much she can get away with. She keeps us laughing and I have to be consistant and firm with her! Which is REALLY hard with all she has been through. But I refuse to raise a BRATT for a kid!!!
Thanks again for all your support and prayers!

January 25, 2010
I haven't updated in a while....Brooke is doing really well!!! Her liver is happy and stable. We are still on weekly labs but this is because they are trying to get her Prograf level stable. They want her level between 4 and 5 and hers has been a little low 3.3. So they are watching and making some little changes....Bo went up last week and got stuck in traffic so labs were done but an hour after her scheduled dose so it wasnt a true trough reading so again he had to take her today. So depending on todays results, Martha said their goal is to try to get her to bi-weekly labs and then monthly. She should not still be on weekly. However, if her labs are happy and I know everything is OK weekly labs are fine with me kind of use to it now and a part of our life and our norm! I will take it for a healthy beautiful baby girl!!!! Georgetown is amazing and their staff is GREAT and I do not mind visiting weekly! Brooke just loves Miss Lorna anyway!
Brooke talks up a storm and is a little polly parrot, repeating everything said! We really have to watch what we say even my older kids....her new word is dummy! YIKES that is her older siblings teaching that so we are VERY careful now!!! She is so sweet tho and keeps us smiling and laughing and just thankful each day that God has blessed us and continues to bless us!
Each day I am reminded what a BLESSING and GIFT from God she is! Thank you for your continued prayers!! God does answer!!
I will post later what Martha says the labs look like today. Oh by the way...her EBV is elevated but stable.

January 11, 2010
Thank goodness the wedding is behind me! Brooke was very cute and I will post pictures....She made it up the aisle to the very front, turned around and came running back laughing the whole time! The wedding waw beautiful!
Brooke went for labs yesterday and her proraf this week was low. So we are doing a small adjustment in her meds and repeat on Monday...otherwise liver is stable.
Here are pics from the wedding...others will have to come later...Thanks for your support!
All dressed up had to sneak a family picture in!
Here is the bride and groom with my mom, me and Bo and my sister her husband and four brothers with their wives! We have a BIG family...wouldn't want it any other way!
The three flower girls put the ring bearer in a box..poor Josh!!
Chelsie was the maid of honor...mommy's girl is growing up!
The three flower girls and ring bearer!
Here she is at the front of the church before she came running back to me!
This is where she spent her time during the ceremony!

Brooke's cousin Leslie and Brooke exchanging hugs!

January 5, 2010

HAPPY NEW YEAR!!
Brooke is all dressed up for her New Year's night with Nanna and Pappaw! She has her bling bling (thanks to Grandma Julie) and her fancy new outift (thanks to Auntie Jes)! Check it out she is actually starting to get some hair...
I know and I am sorry for not posting pictures. I have been SO busy!!! We had a New Year's party Thursday night(a great time with some VERY special friends and family). Saturday morning we had a VERY special Christmas breakfast with our best friends (Brooke's Godparents) and exchanged gifts. The rest of the week my time has been devoted to working both jobs and working on my nieces wedding. She gets married on Saturday and my friend and I are the wedding coordinators...WOW what a BIG job!! Brooke and Chelsie are both in the wedding. I am not sure how well Brooke is going to do walking down the aisle but I am hoping with Chelsie at the front she will walk to her....fingers crossed please!! So I have LOTS of pictures to post next week....Christmas Day, New Years, the wedding!
Brooke went for labs yesterday and guess what they were stable...her Prograf was high so they are cutting her back so we have to repeat on Monday. However, good news they took her off another medication!!! YEAH!! No more ursodiol. We are down to 2 now! Can you believe it...I think she started out on 15 and now 2!! She has come a LONG way and I am so thankful for her and the blessings God has given us!
Thanks for your prayers and support! She is such a bundle of joy and keeps us laughing all the time! So look forward to pictures next week!

December 29, 2009
My apologies for not updating sooner but it has been a very busy few weeks! With the snow storm, my dad going into the hospital, Christmas shopping, Christmas itself WOOWEE we have been busy!
Brooke's labs have been stable and we have been going to DC every other week now. Last Monday Lorna had a hard time getting labs three sticks later it was a go. Brooke did good and had Lorna and I laughing! She still gave Lorna a hug and wanted her lollipop! We return next Monday to repeat.
Christmas day was a very special day! Brooke was so much fun this year! Santa brought her lots of gifts as everyone else and she was spoiled ROTTEN! Chelsie and Dustin had a very nice Christmas also with lots of gifts! I SO enjoyed my kids and family this year! We still have more gift exchanging to do this week and weekend and I will post lots of pictures this weekend...I promise!
My dad is doing ALOT better and was able to be home for Christmas! Really puts into perspective what the holidays really mean! Celebrating Christ's birth and the reason we all live today! My favorite saying at Christmas is we need to put CHRIST back into CHRISTmas!!! Thanks to HIM we are able to celebrate Christmas with our family and friends!! He has blessed me and my family time and time again! Merry Christmas!

Merry Christmas from the Wallace's!!!

December 9, 2009
Martha called to say Brooke's labs looked good and they were awaiting her EBV results. If they are over 100,000 we return on Monday to repeat labs if I do not hear from her I get the week off....I like Martha alot but I hope I do not hear from her.
Brooke enjoyed making gingerbread houses on Saturday...she would eat the candies put them on the house eat some more put them on house....it was a cute special memory!
Here is her finished house...and sissy made the christmas tree for her to decorate too!
CHEESE!!!! My beautiful kids...with everything going on in my life I can sit back and still say I am
TRULY BLESSED!!!
These are my AMAZING parents...if it wasn't for them I would not be the person I am today. All that I am I owe to them! They are the BEST!! When I am working, this is who has Miss Brooke...and yes they have TOTALLY spoiled her! But that is what Grandparents are for!
Here Brooke, Chelsie and I after making our houses and trees at my parents. Can you see the icing in Brooke's mouth still! Yes she is still eating her house!
This is my wonderful niece Mary Beth and her mom with Brooke. Mary Beth and Brooke are princess pals! Brooke just adores her!
This one I just had to throw in because I love it sooo much...Brooke with her big brother!

December 7, 2009
We went to DC this am and it is SOOOO much nicer going up at 4:30am and waiting an hour for the labs to open then sitting in that AWFUL traffic for 3 hours!!! Brooke did amazing once again! Now we wait for the results. They are sending her EBV to two different labs to compare the results. Prayers her labs come back good!
Now I would like to share with you some pictures of this weekend with Brooke and the Snow!! All I am going to say is she did NOT like it and that is what she kept saying!!!

You want me to go where and do what?!?!?!
BUT MOM!!!!.....It's cold out there...do I have to?!?!?
OK I am out here now let me go back in!!!
I DON'T LIKE IT!!! Then sissy threw a snowball at
me...."OH SHOOT"...

December 2, 2009
So sorry for not updating this is a very busy time!! Christmas tree is up and oh boy what a difference a year makes with Miss Brooke! I have two broken bulbs and candle and she has tried to open presents. She calls everything Christmas. She argued with me that she needed to open Christmas! =) We are making Gingerbread houses this weekend with my family...should be fun! We tried to go visit Santa but she would not get close....she kept her eyes on him the whole time and said who's that....but screamed if I took a step closer...still working on it though...trying to tell her he's nice he brings you toys....not working yet! =) If you ask her what Santa is going to bring you she says toys...pink ones and baby dolls!
Brooke's EBV numbers were slightly up last week so we are repeating Monday. They are going to send them to two different labs to compare results. Prayers!
Brooke has been fighting a cold for over a week now. Yesterday her drainage from her nose turned yellow so I took her to the pediatrician. Dr. Richman said her ear she had been pulling at had bubbles of fluid and said we better put her on an antibiotic. I called Martha and told her so if her liver numbers come back crazy it could be from her body fighting this cold/infection.

Novemer 24, 2009
We went to DC yesterday morning. Brooke and I left at 4:30am...I was determined to be ahead of all that CRAZY traffic! It worked I arrived at 6:15am. Around 6:30 we went inside. The lab doesn't open until 7:00. Brooke and I were waiting in the waiting area....and in walks Miss Lorna. Brooke said Lorna! She said Brooke what are you doing here so early...I explained we had to beat the traffic. Brooke then chimes in Lorna I go back....I said Brooke we have to wait it isn't open yet. Lorna said no come on back Brooke. We preceded to the back and Brooke kept talking...we sat down to get labs, she pulls her sleeve up. Lorna said ready...Brooke then starts to fuss not cry just a fuss...I said it's ok Brooke remember Miss Lorna is Great she is nice and helps you....Brooke's reply....hurt hurt MEMBER!! It was priceless!
Brooke did not shed a tear and is just one amazing little girl! She never ceases to amaze me! Her labs came back and were good....still waiting on EBV results. Depending on those results will determine if we can go off the Valcyte medication.
I apologize for not updating as much...I am so busy now working two jobs, trying to get ready for the holidays...I have been shopping early...with Brooke you just don't know what tomorrow brings so I like to TRY to be ahead of the game! I am going to try to do better though!
I do want to say with Thanksgiving approaching on Thursday...remember to share with and thank those that have blessed your life those you are thankful for and the MANY things God has done for you and blesses you with! This Thanksgiving we have a lot to be THANKFUL for! God has NEVER left my side he has been there every day with me and FOR me! Brooke and my family are a true gift from God and I would not change anything. This journey has taught and continues to teach me so much, and I am truly thankful! Thank you for your support and prayers! We love you!!

November 13, 2009
Martha called and guess what...Brooke's labs are stable and we get to discontinue a med. They are taking her off the iron supplement! YEAH!!
Also it gets better....Brooke gets to skip labs next week! WOOHOOO! Been a very long time since we got to skip labs for a week! What a BLESSING!!!! What a day to CELEBRATE!!! I needed good news today!

November 12, 2009
We made it to Dc to day....took 3 hours!!! Good Grief how do people commute. I feel for them!
Brooke got her labs and again did great with Lorna! She told lorna she was bad it hurt...Lorna got a kick out of that. She said...Brooke I am helping you so it won't hurt. Brooke said...What? It was cute...Lorna is the VERY BEST!!
After labs, it was a trip to see Dr. Kaufman and Martha! Dr. Kaufman felt everything last week was a bug and nothing to be concerned about. She looked and sounded great. Brooke played with Dr. Kaufman's head so he could listen to her lungs and heart. He said anything to get an exam! I am telling you we have the BEST team ever! We could not ask for anything better than Georgetown! He also said he does not need to see us for 3 months!! WOOHOO!! Now if we can get her labs stable so we can make that 3 months...actually I would be happy with once a month...heck 2 a month and I would be happy!
Thanks for your prayers. Brooke is growing and talking and playing and full of life and I have all of my GREAT supporters to thank! Everytime I see her so somthing new or hit a milestone....I am so happy and say to myself wow look how many people are behind us!

November 9, 2009
Brooke was able to come home tonight!! We have zero answers to why or what happened. Her liver numbers have dropped alot so that is good. We have to repeat labs Thursday and see the doctor. Maybe some of the tests will be back and give us some answers....if not that is fine I will take that she is home and everything is ok and another one of God's blessings! For now I am going to snuggle with my baby girl!

November 8, 2009
We still have no answers. They said the biopsy results would be back after 10pm last night. They have told us nothing. I am sure they are waiting to make rounds but I want to know now! I had to come home to work and get Dustin and Chelsie situated. Bo is up there. I will go up this evening I hope I know more! They did get a room. They are on the transplant side. Seems like they were busy and had no rooms. They had to put her in an old supply closet/room that was set up for overflow. I was just glad she came out of the ER. It was nasty with germs down there!
Please pray for Brooke! I will update when I know more.
1:35pm...I spoke to Dr. Rechtman, and she said it doesn't look like rejection. Thank the Lord and thank you for your prayers! She is giong to run the H1N1 test and a cat scratch fever test to see if it may be either one of those. Her fever is gone and she seems like herself. When I know more I will update....for now we are trying to just find out what is causing her liver numbers to be so high. Prayers please.

November 7,2009
7:55am
Bo just called they are about to do a liver biopsy...this will tell if it is rejection or something else.....please pray it is not rejection!
Wow....where do I start...
Remember when I said Brooke's labs were great on Tuesday and was waiting on her EBV results. They called yesterday to say her EBV numbers were down drastically! WOOHOO! This was awesome...mind you this was at 4:00pm. At 11:00pm we found ourselves at Georgetown ER. Her liver numbers CRAZY high!! Double digits are now 4 digits. Not sure of what is going on I just pray it is NOT rejection!! They say a virus can cause this I hope this is the case for her!
They are admitting her but we do not have a room they are full so I am not sure what the plan of action is. I have been up for 29 hours straight so I came home to get the other two straight and a nap then back up. Bo is with her right now. They had a hard time starting an IV...I lost count of the sticks. Let me tell you again how GREAT her transplant nurses are. They heard we were in the ER and one of the nurses came down from the floor to try to start Miss Brooke's IV...I am telling you people when you here MAGNET hospital....I think GEORGETOWN!!
So with all this said please keep Brooke in your prayers today! ME TOO!! This roller coaster is NOT fun! I HATE IT!!
The emotions are from one end being excited and happy and relieved her EBV looks GREAT to hours later admitted and her liver numbers CRAZY from 3 days previous!?!?!? How does this happen? This is SO frustrating, you can't plan anything, you can breath a sigh of relief. Martha, said to me once...Jen everytime I call you you sound so nervous...I know because I am...I never know what is about to be said to me! The only thing that gets me through the day is when I look into her sweet eyes and see one beautiful amazing little girl who has been through so much in her tiny life if she can do this I can too! She is such a fighter and I love her to death...she is going to be ok! I just know it!

November 5, 2009
Brooke went for labs and the results were good no changes. Now we are waiting on the EBV ones to come back which will probably be tomorrow. She has a nasty cold, nose running like a river! No fever thank goodness! =)
No updates other than that....Still haven't gotten new pictures...she hasn't been in the best of moods with her cold...so I will let her be! =)

November 1, 2009
Brooke's EBV labs were slightly increased last week so yes we go back again this week. I will be taking her up on Tuesday since the kids are out of school...HOV here we come! YEAH!!
We had a very busy weekend....Yesterday was Dustin's birthday party, he turned 10 today! WOW! Brooke and Jessica's one year anniversary celebration and our annual family Harvest fun day! SO BUSY BUSY DAY!!
Thanks to all of your votes, Brooke's costume this year was the.....CRAB! Actually it was a lobster! I will post a couple of snapshots but I am going to pose her for some pictures in it and post later! This was quick, as I had to work and got to the house at 3:15 party started at 4:00 so yes a little rushed! But we got it in and had a BLAST!!
P.S. As your votes placed Brooke in the lobster costume...she and her nanna wanted a COW...so to say the least there will be pictures of Brooke in a cow costume also a little later. Thanks for all your support!

BROOKE WOULD LIKE TO SAY.... HAPPY FALL YA'LL!!!
Even though the leaves have not all fallen, Dustin felt the urge to rake...Brooke felt the urge to mess up his piles! She loved playing in the leaves!

Tuesday, October 27, 2009
Today Brooke is 20 months old! Wow where has it gone?!?!?
We went for labs yesterday and Brooke's liver labs look great. Her EBV from last week was descending...slowly but down instead of up is GREAT!! We were an hour late getting labs because that place was packed! So I am sure and Martha thinks so too, her Prograf levels were lower than usual. So they are upping her dose slightly just in case and will again recheck next week. We just can not get enough of this place....you would think Brooke would be tired of that place....I know I am! Not the people that is for sure they are all fabulous....Brooke and I just love Lorna she is the BEST lab tech ever! We have had her since Brooke first started her labs. Lorna tells me she remembers when Bo brought her in their for the first time, how tiny, yellow and so sick....what a difference a year makes. She is so fiesty and full of spunk. So much better this way!
So we return next week for another wonderful trip to DC in the wonderful traffice of DC!! URGGHH the part I do not like!!!
Saturday we are celebrating my son's 10 birthday! So hard to believe he is going to be 10! WOW. He is such a gret kid. So easy going, mellow, no temper, just the greatest son I coull ask for. He is just like his daddy and following in his daddy's footsteps. He loves hunting and fishing and fourwheelers...and most importantly just loves Brooke to death. They have such a great relationship! He reads and plays with her so much I love watching them.
We are also celebrating Brooke's one year transplant anniversary. I was away the weekend of her anniversary for some much needed Jen time then had to work the past two weekends so I asked to work the early shift Saturday so we could celebrate and have a great day! I will post pictures next week! Thanks to each of you and all your support this past year....without you we would not be where we are today! Your prayers, messages and opening your hearts to my family is the best therapy I could ask for, seriously it is what got me through this past year! THANK YOU. You truly are the BEST and I am truly greatful to have you in my life!

Wednesday, October 21, 2009
Brooke went to DC Monday and her labs and I quote..."beautiful"!! YEAH!! Now that is her liver labs. Her EBV is still pending. Dr. Kaufman said Brooke's tonsils on Monday were 4+. She had to go back on Tuesday to see an ENT. He is going to discuss and wait for the EBV results this week with Dr. Kaufman and let me know what they decide. They do not like to remove the tonsils in babies under 3. Will do it in babies at 2 and even 1 if their health requires it. So please keep Brooke in your prayers with this NASTY virus!! I will post later in the week when we know more.
With that, Chelsie is home sick today. I tool her to the pediatrician and she has the flu. The pediatrician said that 99.5% of all flu cases right now are the H1N1. She has a fever of 101.4 and achey. She has a cough and sniffles. However, her concern....she can't miss school! CRAZY GIRL!!! She is home and will be home until this fever breaks and she is feeling much bette! Brooke and Dustin are both staying with my mom. I can not take the chance of Brooke catching this! The pediatrician put both Chelsie and Brooke on Tamiflu. I hope this helps Chelsie and prevents Brooke from catching this flu! Prayers for both my baby girls!

Wednesday, October 14, 2009
OK...my apologies for not updating in over a week. BUT, I went on a mini vacation to Ocean City for a girls get away....that was MUCH needed and an amazing trip! I tried to hook up to the internet, but there was no service. So, please understand though I am a few days late posting on Brooke's year transplant anniversary.... my thoughts were on Brooke and Jessica and all the support I have received from each and everyone of you!!
Friday was Brooke's one year transplant anniversary. I was having a really hard time Wednesday with things....down and discouraged about things. A couple of friends put things into perspective and I got myself together. One friend said this....Jen, you knew it wasn't going to be easy...there are going to be ups and downs. She is exactly right!
So with that said...I am VERY blessed. Yes, this has been a very rocky road....one I pray noone has to experience. However, Brooke and Jessica are doing GREAT!! Brooke has so much attitude and just full of life. We always wonder why things happen in life, why God changes are lives when we think everything is OK, Why did God bring Brooke into my life when I thought I was done with two kids and then have her as sick as she is....WELL because God knows so much more than us!! God brought this beautiful baby in my life for more reasons then I know! But what I do know is she is amazing, her journey has brought me closer to my famly and friends, opened my eyes to life in more ways then anyone will know. She has taught me so much in her little year and a half of life and to God I thank you! Thank you for Brooke and her life, thank you for life's trials and tribulations that make me stronger and closer to you each day, thank you SO much for blessing me and my life!
So, as I am thanking God this year post transplant, I would like to thank some other very special people in my life that have been there stood by me and supported me through out this past year and half!
VERY SPECIAL THANK YOUS....
Jessica: WOW, As I have told you over and over and over again, there are NO words to express or even begin to share what I feel each and every day towards you. Thanks to God above and YOU, my baby is alive. She will expereince life because of your selfless act. When Brooke smiles, talks, dances, plays, sleeps so peacefuly, looks up at me and says mommy I love you....I have you to thank! You are one amazing person and I am so proud to have you in my life and most importantly have the privilege to call my very dear friend! Thanks not only for saving Brooke's life but all your love and support to Chelsie and Dustin, your running them around when I need you to and ALWAYS being there for me!! You are the BEST!!
Jeremy, Danielle and Justin: Thanks so much for being SO supportive of Jessica and her decision to go through with surgery to save Brooke's life! Jeremy, you never said a word you said it was her choice and I have a lot of respect for you because of that! Thanks a million! Danielle thanks for making me laugh and keeping my mind off things the day of surgery...it will be a day I will never forget and you are all over it with you wonderful personality!! Thanks for loving Brooke so much....she just loves you to death! Even though you teach her some bad things (pinching, get me lunch NOW!...shall I go on) you are amazing and I appreciate yur love and all you do for her! Justin, thanks buddy for being Dustin's friend through all of this! You were a great cousin but more importantly a great friend. You kept his mind off things and I hope he did the same for you! I know you guys are going to be the best of friends and get in lots of trouble together like both of your daddy's did! =) Thanks for loving Brooke so much! I know everytime you see her you always talk and play with her and she loves you! You both are great kids!!
Bo: My very dear and loving husband! You have stuck by my side and our family's side! You are one heck of a man! I know this has been a rough year for our family and we have had our ups and downs but we are together, our love is stronger and we have stood by each other's side through it all! Thank you for loving me and always being there for me. Thanks for the shoulder to cry on, the many laughs we have shared together in the hospital and home at poor Brooke's expense! There are so many obstacles we have overcome in such a short period and so many more in the future but as long as we stand strong, keep God first, love and lean on each other we will make it!! I love you yesterday, today and ALWAYS!!
Chelsie and Dustin: You two have been through so much this past year and a half. You are on this journey with us and you two have been GREAT!! Mommy and Daddy love you and care so deeply for you! You both are so good to Brooke and she loves you both more than anything. Thanks for being so understanding when we are inpatient with Brooke and have to do so much with her health! Please know you both are loved and special to us and though right now we have to do so much with Brooke she is no more special or loved more. All three of you are my little angels, all three of you are loved the same, and all three of you hold a special place in my heart! I am so proud to be all of your mommy's! God blessed me with three of the BEST children I could ask for and I thank Him every night for giving you to me! Know I am always here for you no matter the time or place and know I love you DEEPLY! Thanks for being who you are and the best kids a mommy could ask for!
Mom and Dad: Thank you so much for being so supportive and loving! You are amazing parents that have taught me so much in life! I am the mother I am today because of you! Thank you for the meals, cleaning my house, laundry, and taking care of Chelsie and Dustin when we were focusing on Brooke's fight for life! They never went without and never missed a beat because of you! Your continued support and all you do for us does not go unnoticed and we are deeply appreciative. Mom, thanks so much for retiring early to be there for Brooke. There is NO way I could have left her or leave her each day as I go to work and rest comfortably knowing she is in GOOD hands!! So Thank you!!
Patti & Gilbert: Thank for both for all your love and support during this trying time! Your help with the golf tournament and visits to the hospital, phone calls and monetary gifts are greatly appreciated!! Thank you both!
Debbie & Jimmy: Thank you both for your love and support this past year and a half. Thank you for visiting us at both Johns Hopkins and Georgetown. Thank you for the phone calls and being there for our family!
To my brothers and sisters....Randy, Debra, Sherri, Paul, Chip, Chris, Tony, Laurie, Steve, & Linda:
Thank you to each and everyone of you. I am so proud and thankful for such a loving and caring family! You ALL have stood by my family's side and helped us in SO many ways...to the day of transplant(wow wasn't that waiting room packed) to helping with Chelsie & Dustin, to the meals, the monetary gifts, the golf tournaments, the softball tournaments, the visits, the help and most importantly your love, prayers and support! I could not make it on this journey without each one of you by our side. Brooke is so blessed to call each of you Aunt and Uncle! The many memories she already has of each of you is just amazing! Thank you for loving her and helping us!
To my nieces and nephews: You guys are GREAT!! Thank you for the many prayers and love! You all hold a special place in my heart. Mary Beth and David thank you for visiting us at the hospital and relieving us of hospital food...Mary Beth your cooking is amazing! Amanda, you were and always there for me. Thank you for staying in touch each day and thinking of our family and loving Brooke so much! (Her and Chase will be the best of friends). Jason, you are one special guy! Your love and prayers for Brooke never stopped you prayed and had your church praying and I appreciate that! Kevin and Brianne thanks for your prayers and All you did and do also, we love you bunches and appreciate your support! Angela and Greg, though your were miles and miles away I know you were praying and staying in touch! We love you bunches! Lori and Mark, thank you for praying and staying in touch and visiting us at the hospital and loving our other two as much as you do! We appreciate it! Tiffany and Devon thanks for always checking on us and praying for us and helping out at the tournament! We love you and thank you. Corey, Dustin just loves you to death! Thanks for taking him hunting and spending time with him and getting his mind off things! You are the best! Chad and Heather, thank you for caring so much for us and keeping Dustin and Chelsie's mind off thingss too! We love you ALL!!
Reggie & Stacey and kids: You guys are the best friends I could ask for! You stood by me every step of the way...broken leg and all! I could not have done it without you! From the tears of fear to the tears of rejoicing to the tears of relief you had your shoulder out there no matter the time or place. Stacey thank you for spending the night with me at the hospital and being there for me! Brooke is so fortunate and blessed to have you as her GodMother! You are an amazing woman whom I love dearly! Know you are very special to me and made me half the mommy I am today! You helped out SO much with the kids when I was inpatient, the meals, the AMAZING work on the golf tournaments, the dance....You truly are what is TRUE FRIEND IS ALL ABOUT!! Love you Girl! Shelby, thanks for all you did and do for Brooke and my family! You are one special kid whom I hope Brooke turns out to be like! Collin, thanks for loving Brooke and caring so much for her...even when you thought it was food on your hand! Elizabeth, you are such a sweetheart! Brooke is so fortunate to have you in her life and thank you for loving and playing with her! She has a lot to look up to in life and you being one of them!
Amy & Joey: You guys have been and are the greatest friends! You support and love is just amazing! My life is forever blessed now that I know you! Thanks for visiting us, camping with us, loving us and supporting us! Gracie, thank you for your messages and get well wishes and prayers for Brookey...you are one special little girl! Carley, I can not wait for you and Brooke to become best of friends like your mommy and I! Thanks guys couldn't do it without you!
Julie and Gary: Thank you so much for all your love and support and prayers you have shown to us this year! Julie thanks for being by my side, and Jessica's the day of surgery! I appreciate you being there for Jes and by her side 100% of the time! I know she appreciates and I know I do! You are great and thank you so much for praying and caring so much for my family!
ENT & Facial Plastic Surgery Center of Fredericksburg: WOW!! What an amazing group of doctors and girls! You have been there by my side every step of the way. To the donated time off, to the monetary gift for the first surgery at Johns Hopkins, to the phone calls, love, messages....you guys have been there for me. Thanks for understanding, allowing me the time off, helping with the work so my desk didn't overload, thanks for being GREAT friends....the twelve years I have been there you have been there by my side but this took the cake! You guys are the BEST bunch of people to work with! Evie, thanks so much for telling me the other day...Jen you knew this wasn't going to be easy. I needed that and it put me back where I needed to be! Thanks! Sarah, thanks for ALWAYS being there caring, listening and helping my family out! You are not only the best manager, but a GREAT friend! MeMe....wow, I knew everytime I was having a low moment or Brooke was not doing so great I could call you and count on you to say a prayer and I had peace! You would not only ask about Brooke but always asked how Jen was doing! Thank you SO much for being the best friend you are! Thank you for our many talks and laughs! You are one amazing woman/friend whom I look up to so much! Thank you! Jo...from the time I found out I was pregnant, to babyshower, to the first surgery to transplant to now you have been very supoortive, loving, caring! Thanks for all you did and do for me! Thanks for keeping me desk clean while I was gone too! Becky, thank you for being a great friend, supporting me and my family! We have just recently became close friends but it feels like I have known you forever! Thanks for taking me away to the beach with all your friends and giving me time to relax, cut loose and get my mind off things! You are fabulous! I can't name everyone at work but know I appreciate ALL you did and do for me! Docs, thanks for being so supportive, understanding and helpful in this trying time in my family's life! You guys are the BEST boss' anyone could work for! Your support from the beginning to the golf tournaments and softball tournament to now has been amazing thanks!
White Supply & Glass: Thank you guys for all did and do for us. Bill, the meals were GREAT!! Thanks for supporting our golf tournaments and helping us out from the time of Brooke's first surgery to present! Thanks for being so understanding then and now when we have to be inpatient with Brooke! Your thoughtfulenss and support is greatly appreciated! Thanks for all you do for Bo and our family! You all there are GREAT!!
Belmont Baptist Church: Pastor Stevens and members, Thank you so much for all your love, prayers and support! You all know as well as I, that God was by our side every step of the way! I ask this often...how do people get through life and the journeys ahead with out Him! I know I could not and do not! God has been SO good to us and I know you all prayed so much and still do pray for Brooke and our family and I am truly greatful and appreciative. From the Pastor being there when we thought we were going to the OR for a transplant to the actual day of the "real" transplant, to the meals, the phone calls, the visits, the support with the golf tournaments and softball tournaments to the caring ad support from you all we are truly greatful and appreciative of it all!
Freddie & Diane Jobe: Where do we start...you guys are GREAT!!! Your love and support of Brooke and our family is amazing! The hard work you put into the softball tournament and staying in touch and helping us in so many ways is such a blessing to us! Your kids, and let me say this I tell Bo this all the time, are the greatest! You guys have done a great job raising them! They are so polite and caring and compassionate to Brooke and our family! There isn't a time that goes by that they wouldn't find me on facebook and the first thing they said was how's Brooke! That meant ALOT to our family! You should be proud, but with great parents like you they get it honest!
Chelsie and Dustin's friends and Parents: John & Jeannie Anderson, Mr. & Mrs. Bledsoe, Kevin & Missy Paddy (and grandma ) Susan Burdett, Kim Trout...and more, thank you for taking Chelsie and Dustin and keeping their minds off things and supporting my family! This has been a journey for them as well. They are in this for the long haul too and your compassion and welcoming them with open arms and caring so much about them has been great! They love you all so much and I appreciate and thank you for taking them in and sharing so much love with them! My mind was at ease knowing they were with you and the fact that I did not have to stress. I wanted to be with them and Brooke but when I couldn't they were in great hands! Thank you so much!!
MY "LIVER" FRIENDS: Due to Brooke's condition I have come in contact with some amazing families with the same or similiar conditions! I know you know and follow some of them and pray for them often but their are a few that I would like to give a shout out to and thank! There are some amazing people who have been there to answer questions, left comments and emails letting me know they were thinking and praying for Brooke and my family and I want you to know I couldn't have done it without you either! So Blair (Xander's mom) thank you! Thank you for being SO supportive and caring and ease my mind a few times! (Can't wait for Xander and Brooke to meet next week) Lindsay (Sydney's mom) You were the first person I met online and thank you so much for being there listening and staying in touch. It is so nice to stay in touch with people who get it and truly know what we are going through! Jasmine (Kai's mom) Thank you for listening and being there from the beginning and answering so many questions! It was so nice to talk to someone who had been down the road I was headed and that would relieve so much worries I felt! You eased my mind about Georgetown and you were right...they were great! You listen and still do! I am so glad Brooke and Kai was able to meet and I and you for that matter. Hopefully we can again soon! This time maybe for a playdate! And....Ted & Holly Nelson (sophie's parents) Even though we recently met our journey is so parallel in so many ways. Our pictures and life stories match more than I can imagine! You guys are such wonderful people and Sophie is such a blessing! I know with being right in each other's back yard Brooke and Sophie will grow up to be great friends! Thanks for understanding and knowing what we feel! Looking forward to the WELCOME HOME party with you guys!
Kids Choice Pediatrics: Dr. Richman, Dr. VanHorn and staff: You guys have been the BEST!! From the beginning with our visit to INOVA, to our surgery at Johns Hopkins, to the transplant at Georgetown, to all Brooke's visits in between, you and your staff have been courteous, polite, compassionate and taking that extra mile for my family! I have NEVER had a bad experience...everyone has been so pleasant! Your support throughout this journey we are on has been so great and appreciated! We could not ask for a better group of people in our lives! Thanks for understanding and caring for our family!
GEORGETOWN PEDIATRICS TRANSPLANT: WOW...where do I start?!?!? Dr. Kaufman, Dr. Little, Dr Rechtman (not quite sure on spelling) Dr. Fishbein, Dr Matsomoto, Dr. Bell, the many other docs that assisted (too many), PICU and transplant NURSES!! You guys are amazing! You have been the best to my family! When people ask about Georgetown, I tell them you guys are the BOMB!! The many nurses who love Brooke so much and spend time with her (watching her dance to boom boom pow, taking her out to visit the fish, playing with the toys in her crib, laughing and talking with her, bringing her scooby dooby doo movies...I can go on and on) who could ask for anything else for their little girl. You make inpatient a whole lot easier and pleasant with your compassionate caring loving full of life pesonalities that each and everyone of you have! Docs....you are the best! I trusted you with my prize possesion by BMW (that is for you Dr. Kaufman) and you did not let me down! You took the best care of Brooke and my family and I never felt more comfortable! Thank you....thank you for all your hard work, your knowledge, your expertise, your support and caring attitude you show! You are one Group of AMAZING people and my life is so blessed and better because of each and everyone of you!! Thank you for loving Brooke and making things so much easier in this life she now lives!
MARTHA: I could not ask for a better transplant coordinator! From the first phone call and trying to get my records from Johns Hopkins to you, you have been the best! You have eased my mind so many times. Your knowledge and caring attitude have made my life so much easier! Every phone call, you have taken the time to respond and call me back...from pre transplant with the knots under her skin and bruises and her INR being off the charts to the littlest thing of the blister on her toe(YES my BMW is just not going to do things normal and by the book) so thank you for understanding and being so supportive when I call! I could not have been blessed with a better person! You are truly AMAZING!! You understand and are very compassionate to me and my family! Your visits when we are inpatient are over and beyond and just show the amazing caring person that you are! Thanks for supporting and caring for my family and always being there for me!
So with all that said, know and understand I could not and can not go down these rocky roads and climb these hills and over come all these obstacles in life without each of you and so many more (there have been so many people who have been praying, who cares so deeply, participates in our fundraisers, reads our updates daily, stands by our side every step of the way and if i didn't mention your name specificaly...know it isn't because I forgot or don't care that you care or have done for my family but this post would go on and on and on and on.) Brooke is LOVED so much by SO many people and God could not have blessed me more. So thank you to everyone who reads this site, who is touched by Brooke's life and cares and prays for my family! It is greatly appreciated and does NOT go UNNOTICED!!
And with all that said...Martha called and said Brooke's labs were improved and normal! Of course the EBV, the one we worry about is still pending, but her LIVER is happy one year post transplant!! Thank you all for your continued love support and prayers!! We love you all and are truly blessed to have you all a part of our life!

Tuesday, October 6, 2009
We made another trip to DC yesterday and let me say it was ALOT better than last week!
Brooke's EBV numbers are being watched VERY closely! Very scarey! They went up 2 fold. Dr. Kaufman said this doesn't concern him. If it had went up 10 fold 100 fold or even 1000 fold he would be concerned. Her results this week will not be back until Friday. Please keep Brooke in your prayers! I DO NOT like EBV!!
Her CO2 is also low and will be taking yet another medication. I thought by this time we were suppose to be going down on meds not back up! She is now taking 6 medications...she finished her antibiotic for her toe yesterday so no more of that one but now starting a new one.
Friday is our one year post transplant...Wow what a difference a year makes! I can not believe it!!! Yet, still the many obstacles, roller coaster whatever you want to call them post transplant! VERY emotional week for me. It is very frustrating not being able to breathe in and let it out and feel relieved...something I will never be able to do with Brooke! Please keep Brooke and our family in your prayers.....

Halloween Costume Poll
Ok remember last year we did this...I had you pick Brooke's costume and of course what she went through most everyone picked Super Baby!
She was my Super Baby, that is for sure!!
Let's do it again. I have picked out a few costumes. I need your help to pick the best for Brooke....now the reasoning behind the "fish theme" SHE LOVES FISH! Georgetown's theme on the floor...fish so she is in love with them. However, there are other cute costumes too.....so you guys cast your vote and let me know which one!
Here are the choices:
1. ) Ducky 2.) Fishy
3.) Peeps 4.) Crab
5.)Tootsie Roll

Friday, October 2, 2009
On Sunday, my niece Amanda and I took Brooke to Georgetown to meet Sophie Grace! It was GREAT! Sophie is a doll and I know alot of you pray and ask about her all the time! She is doing really good and will be heading home possibly Monday. So please keep her in your prayers that Monday will be the discharge date! It was SO nice to connect and visit with Sophie and Mr. Nelson. It is nice when you talk about your life and they just GET IT!! It will be so nice for Brooke to have a friend as sweet as Sophie through out her life where they both will know it is ok, and there are others out there just like them, and they are not alone! Looking foward to a long friendship with the Nelson's! Thanks for allowing us to come up, it was an honor!
Here are some pictures of our visit..... (You can also follow Sophie's journey by visiting http://www.sophiegrace.org/)
Sophie and Brooke in the crib together....Getting to know each other!
Dr. Little with Brooke and Sophie! She is one great
doctor who cares for both of these little girls!
These are "some" of the MANY amazing, fabulous,
wonderful, caring, extraordinary nurses at
Georgetown that take care of these little angels!

2nd Annual Brooke Marie Wallace Golf Classic Photos

THANK YOU ALL!!

Thursday, October 1, 2009
So....Brooke has something going on with her toe! I took her to the pediatrician, Dr. Richman....the best pediatrician ever....who consulted with Georgetown. There is no reasoning or explanation as we are not sure what happened. Monday when we went to DC for labs Brooke screamed from the time we got on 95 all the way up and all the way to the golf course. Once we got to the golf course she was ok, still not herself but not screaming. When we got home she was favoring her foot. We looked at it and nothing appeared out of the ordinary. The next morning, however, her toe looked like this....
We are not sure of she got bit or stung by a spider or what? She was put on an antibiotic and this am it looks like it is getting better. It isn't as tight, looks and feels softer. If it wasn't the plan was to go to DC today. Please keep Miss. Brooke in your prayers. The instructions, keep her from popping it....how do you keep a toddler from not walking on it and possibly popping it....well Brooke now has a big sock full of polyfil that cushions it and she hobbles through the house and outside. Will try to get a picture of that later.

Tuesday, September 29, 2009
I want to take a moment to thank each and everyone that showed up yesterday for the golf tournament! To all of our golfers, sponsors, helpers, golf course....we are truly greatful and appreciative! We can not make it through this journey with out each and everyone of you! Thank you Thank you Thank you for supporting and caring for our family so much!
I will post pictures later on in the week. I didn't have my camera so I have to obtain photos from family and friends. My focus was leaving the house at 5:30am yesterday and heading to DC for Brooke's labs hoping to be back in time to see the golfers before they headed out on the course....to say the least DC traffic did not cooperate and we didn't get there until 10:00! URGHH.
So, Brooke and I and my two nieces took a cart and headed out on the course to meet them! It was a beautiful day and Brooke waved and told the golfers TaTa(thank you) and Good Uck (Good Luck)!
The rain held off til the end of the lunch and was a very nice day with a very nice turn out!
A very special thank you to my two dear friends, Stacey and Jessica, for working so hard on this tournament and making it a successful tournament! We are greatly appreciative and thank you for pulling this together!
Again, thank you to all the golfers...with out you we would not have a tournament! Please know we are so appreciative of your support!
Now to Brooke and her labs....Brooke's prograf was even lower this week with the increase of her meds. From 3.9 to 3.1. So they are upping her dose again from .06 to .07. Please keep Brooke in your prayers as her liver numbers were slightly elevated this week....and she said SLIGHTLY! She thinks it is becasue of the prograf being so low and I pray that with this correction her liver numbers will come back down. So guess what....yes another trip to DC next Monday! Her iron is climbing from 12 to 25. EBV is still pending.
I will post more later in the week on her EBV, if we are lucky and the results come back!

Friday, September 25, 2009
Ok the weather is going to be GREAT on Monday for the golf tournament! Come on out and spend a beautiful day with some amazing people....including the GUEST OF HONOR...BROOKE!! We will be going to DC that morning for labs and hopefully be back by 8:00am. BUSY DAY!!!
It is not too late! We can take golfers all the way up to Monday morning! So if you feel a little sick day coming.....Monday would be perfect!
You can email me your team and team players wallacefamily@vabb.com or call Stacey 540-850-5165. You can also register online click 2nd Annual Golf Classic and click the paypal link! If you register thru email or phone call, you can just pay Monday morning! Thanks again! We are looking forward to meeting you all and thank you for supporting our family!
Hopefully, and please pray, that we get results of Brooke's EBV levels today!!! I will call later this morning.

Tuesday, September 22, 2009
Brooke's labs were ok...EBV from last week....lab says they never got it! URGHH Dr. Kaufman says he is not concerned, everything looks really good. Her iron is going up. We did have to give a stool culture to check for any blood. We do have to go back nect week to repeat labs again. She weighs a little over 22 pounds. Dr. Kaufman is the BEST!! What an amazing doctor. He is trying to get us off this once a week trip to DC and monthly visits to him. I think Brooke just finds it in herself to visit them on a weekly basis. Lorna is on vacation for two weeks starting Septmber 1st so I pray Brooke gets a break while she is gone...prayers please.
REMINDER: WE NEED GOLFERS, NEXT MONDAY IS OUR SECOND ANNUAL GOLF TOURNAMENT!!! PLEASE IF YOU CAN GOLF OR KNOW PEOPLE WHO DO PLEASE SIGN UP UNDER THE TAB ABOVE OR EMAIL ME THE INFORMATION AND YOU CAN PAY THE DAY OF THE TOURNAMENT. MY EMAIL ADDRESS IS wallacefamily@vabb.com. I JUST NEED TO HAVE A COUNT OF HOW MANY GOLFERS WE WILL HAVE FOR THE GOLF COURSE AND FOR FOOD ARRANGEMENTS! SO PLEASE SIGN UP TODAY!

Wednesday, September 16, 2009
Georgetown called to say Brooke's labs look good and there are no changes this week! She said we do not have to repeat labs next week. However, we have an appointment for clinic Monday so she actually to get repeat labs done. Her EBV labs are still pending, should hear by Friday those results.
Brooke did not eat very good yesterday so I hope today is a better day.

Tuesday, September 15, 2009
After a 3 hour commute and an hour and a half wait for blood draw...Brooke's labs were drawn! WHAT an exhausting day! I pray this week her EBV numbers come back and they are readable and the results are good! I can not believe we have not been able to get these results for 2 weeks!
Brooke is doing really well! She is using the potty quite often! She makes us laugh all the time. She is growing up SO fast! On the way to DC yesterday morning Brooke and I were talking...stuck in traffic what else can you do...I asked her where we were going...she said Lorna (our lab tech), I asked her what is she going to do...she pointed to the spot where Lorna draws the blood...I then asked Brooke what she was going to do...she pretended to cry....it was so sweet I about died laughing at her so of course she continued for quite some time to repeat herself!
Martha is out this week so I am not sure when I will get a phone call about her labs. Hopefully, it will be today. As soon as I hear I will post. Thank you for your continued prayers and support!

PLEASE....WE NEED GOLFERS!!
PLEASE COME OUT TO
OUR SECOND ANNUAL BROOKE WALLACE GOLF
CLASSIC ON SEPTEMBER 28TH! JUST CLICK THE LINK
ABOVE 2ND ANNUAL GOLF CLASSIC FOR MORE
DETAILS...IF YOU CAN'T MAKE IT PLEASE SPREAD
THE WORD!!

Wednesday, September 9, 2009
With the lab being closed Monday, Brooke and I headed to DC yesterday to get labs. She was a trooper! She didn't even cry this time made a crazy face and stuck her tongue out but no tears! Lorna, (our favorite lab tech) laughed and said she was getting to big and grown! Martha called last night to say that her Prograf was low and we needed to up that dose and her H&H was low and she needed to be on iron....which was never shipped so we got that all straight today! Man, TOO much to keep track of and remember with this little one and then 2 others starting school and then my work!
Prayers this weeks EBV comes back and that it comes back fine!
Brooke is using the potty ALOT! She is so cute and tells me that she has to go peepee in the potty and then goes both peepee and poopoo! Like I said something has to be easy with this little one! She is growing up so fast! I am not liking it at all! I thought when she wasn't gaining weight I would have a teeny tiny little one all the time! Just Kidding! I am glad she is growing up and hitting her milestones! She is one AMAZING little girl! Thanks for all your love and support!
We also still need golfers and sponsors for the Second Annual Golf Tournament on September 28th, please spread the word!Thanks in advance!

Saturday, September 5, 2009
Brooke's EBV labs did not come back. I guesss her blood clotted or something happened at the lab where it was sent and they were unable to obtain an EBV level! URGHH! Never an issue when we were not following her levels so closely and now we need to watch them they are messing up and all over the place! So we return on Tuesday to try again!
Prayers it works this time!
Also, we need golfers! September 28th is Brooke's Second Annual Golf Classic. If you can make it please check out details above by clicking on 2nd Annual Golf Classic! Thanks for your support!

Thursday, September 3, 2009
Brooke's labs were good. Her Prograf was 4.5 exactly where they want it. We are still waiting on the results of her EBV that should be back today or tomorrow.
I have to put this out ther for all my prayer warriors! Please keep the Sophie Nelson family in your prayers. They could use some today! You can read about her story at http://www.sophiegrace.org/. Here is a picture I have posted before of her and her mommy! PRAYERS for this beautiful family!

Tuesday, September 1, 2009
I was looking back at a year ago on here and all I can say is WOW what a difference a year makes! This time last year Brooke & I were going through testing for the liver transplant! I was just talking about this with Jessica this weekend. I was telling her how devestating it was when they told me I could not go through surgery! A huge punch in the stomach. However, when we were talking I said you know things happen for a reason. With Jessica going through the surgery, I was able to focus on Brooke and take care of her. If I went through surgery I would be recovering myself and not up to taking care of Brooke! God is so good and knows SO much better than we do!
Just wanted to post this as I was in shock yesterday....Brooke has used the potty several times in the last two days. She has pooped in the potty 2 times and peepee 3 times! Oh please let her be an easy potty trainee....something has to be easy with this kid!
We had labs yesterday and we are awaiting the results! I will post as soon as we hear back! Prayers her labs come back good!

Friday, August 28, 2009
We heard back from Georgetown and Brooke's EBV counts are back to her normal 400. I am hoping that with the Valcyte she is taking it will go to a lower number or undetectable! We go back Monday to repeat labs.
I posted Brooke's 2nd annual golf classic brochure. Just click on 2nd Annual Golf Classic above and you will see it.
Thanks for your prayers and support!

Wednesday, August 26, 2009
Brooke now has to take an iron supplement. Her levels were low from Monday. We still have no news on her EBV labs that were drawn on Thursday. Still waiting! I am glad we did not have to remain inpatient waiting on those to come back!
I posted some information on Brooke's golf tournament. I will have the brochure up and available to print off by Friday. The information and prices will remain the same as last year. The only real change is the date (September 28th) and her update...(now post transplant!)
We need sponsors, golfers and prizes/gifts! Any help to this would be GREATLY appreciated! You can contact me at (540) 661-7554 or wallacefamily@vabb.com or Stacey Tolley (540) 850-5165.
Thank you in advance for your support!

Monday, August 24, 2009
Brooke and I went to Georgetown for labs and a clinic visit with Dr. Kauffman. Everything went well. They called a little while ago to say that her Prograf level is a little low 3.7 so they are upping her dose. We will repeat labs again on Monday and they will call later in the week on her EBV levels. There is still one pending from last week that we should know by tomorrow. Her liver levels were stable.
Again, if you can help out with the golf tournament either by sponsoring a hole or putting together a team to golf please contact either Bo or I. You can email or call.
EMAIL: wallacefamily@vabb.com Bo: 540-661-6755 Jen: 540-661-7554
Thank you for your prayers and support!

We need your support!
We are in the process of organizing our 2nd Annual Brooke Wallace Golf Tournament. It will be held on September 28th, at 9:00am at Meadows Farms Golf Course in Locust Grove Virginia.
We need hole sponsors ($100 a hole) and golfers ($300 a team or $75 a player)! If you are interested or know people that would be, please contact me at wallacefamily@vabb.com or 540-661-6755 (Bo). I will be posting the brochure in the next couple of days under the annual Golf Classsic button above.

Sunday, August 23, 2009
Daddy took Brooke to DC yesterday and had labs drawn. I had to work and make up some lost hours. Dr. Kauffman called me and said her Prograf was at 5 and that was ok and he would review everything again on Monday. He ran through some other things..platelets, white blood count, etc., but wasn't alarmed so we will discuss further on Monday in clinic. I know her platelets were elevated because they put her back on her asprin the this discharge.
So, we are ALL trying to catch up on much missed SLEEP! Wow, I am not sure it will happen...never been this tired this long! =)

Friday, August 21, 2009
Sorry for not updating last evening....was tired and ready to get out and home and beat that traffic. Then when we got home we had to visit with family and friends two weeks is along time...especially for Pappaw not to see his Sweet Thing! Then we had school papers to fill out and homework already! WOW!
So Brooke is home....She is now on her Prograf, Ursodiol, Bactrim and now back on asprin and Valcyte. She also has a cream that has to be put on the back of her legs for exzema. We return to Georgetown tomorrow morning for labs and again on Monday. They are really watching her Prograf levels and any signs of rejection since the big decrease in her anti-rejection medication!
Georgetown is AMAZING! As we were leaving a family stated they were going to miss seeing Brooke come by and visit the fish outside their room, one of the nurses said they were going to make Brooke their mascot...she just brightens everyone up around the floor! It was very sweet! We told them we were only going to come back to visit not stay! Let's see how long we can go this time....last span was almost 8 months...we are shooting for a year! Come on Brooke you can do this!
Thanks again for your prayers! We love you all and appreciate all you do for us!

READY....
I can not believe the news we got back from Brooke's labs....The EBV came back undetectable! Is this not the most amazing thing ever!! WOOWEE
Dr. Kauffman seems to think there is an error either on the first lab draw or this one. I say it is the POWER of PRAYER! God can do amazing things and I know he had His hand in this just as he always does in our family and lives!!
We are still waiting on Dr. Kauffman to come in and give us the final OK you are discharged word but he hasnt done that quite yet. He said last night we were most likely going home and called in Brooke's medications to the pharmacy but anything can change!
Thanks for your prayers, love and concern with Brooke and our family! Thank you for helping out with our other two children and things at home! Our places of work for being so understanding and working with us and this crazy up in the air life we live now! It is greatly apreciated and not overlooked!
WE LOVE YOU ALL AND THANK YOU FROM THE BOTTOM OF OUR HEARTS FOR EACH AND EVERYTHING YOU DO FOR US! YOU HAVE TOUCHED OUR HEARTS IN A WAY THAT WILL NEVER BE FORGOTTEN!!

Wednesday, August 19, 2009
Brooke lost her IV last night and had to go to oral meds. Please pray that these will work and we will have some news on her EBV levels sometime today! She is hanging out with Daddy today and I got the other two off to school!
I need to ask for urgent special prayer request for Sophie Grace Nelson. She had her transplant on Friday and is having some complications and could really use some prayer right now! Please keep her and this wonderful family in your prayers today! PRAYERS PLEASE!

Pictures...what else is there to do other than play!

SO.....
We are still hanging out and waiting for the EBV labs to come back which they are hoping will be back tomorrow. Her CMV came back and that is negative.
Dr. Kaufman came in and is going to consult the ENT group to look at her tonsils. I hate that the docs I work for can't look at her but I don't thnk they are going to drive all the way up here for a consult! hahaha However, Dr. Dash knows two here and said they were really good so that eases my mind!
Also, right before Kaufman came in I noticed Brooke had some rash behind her knees. Perfect timing! He thiniks it is just ezcema and allergies and they said at her age is when it starts, so they will watch that.
Her stools are loose so they are going to monitor that too.
Well the ENT resident came in and her tonsils are definetly enlarged and red. She will talk to the senior resident and peds ent about a biopsy or whatever further treatment may be needed.

Tuesday, August 18, 2009
Brooke woke up this am with some noises in her throat....not sure if it was congestion or from something else. The resident came in and looked at her tonsils and said they were large. They are going to have to keep an eye on this because the EBV can cause this. She also had regular stools this am but with some water in it.
So we wait and see what Dr. Kaufman says....he was in the hallway and of course looked in and was saying....Brookie Marie! = ) He just loves the BMW initials with her! Brooke waved and kept on eating her pretzels...

News from the doctor...
So it looks like they sent Brooke's labs off today and it has to go to Pennsylvania. So it is going to take a few days before they will get the results back....maybe Thursday but probably Friday. So we have to sit and wait it out and pray these numbers come back to her normal! They are not doing much to her vitals every 4 hours, infusion every 12 hours and playing and laughing at Brooke the rest! ;) They are so wonderful here! Let me say these are the BEST nurses ever and I am not just saying that....even nurses who do not have Brooke as their patient make a point to say hi and visit and talk with her! They truly are an amazing bunch!
So we wait and see what tomorrow brings...after last night I am just hoping for a good night of rest! I wish they did not have to do midnight vitals...would make my sleep a little bit better. It is what it is and we will just have to catch up on sleep this weekend if God allows us to head home! Prayers Please!

Monday, August 17, 2009
Sorry for no update yet...we are still waiting on the doctor to come in. Also, it is alot more difficult to update now Brooke is older....she wants and needs my attention ALL the time! =)
Last night they decided to give her another infusion along with the Ganciclovir she is already getting. The cytogam is a three hour infusion and they have to get blood pressure throughout the infusion. They gave it in the middle of the night and her blood pressure dropped really low. So the gave her full IV fluids and today she has been fine!
So now we are hanging out watching airplanes, visiting the fish, dancing for the nurses to Brooke's favorite song...Boom Boom Pow, eating and playing with all the toys the nurses have brought in..and of course her scooby doo!
As soon as the doctor comes in and gives us the plan I will update...thanks for your prayers!

Pictures of our latest stay....
My Precious three Angels!
Brooke and her big sissy!
Brooke with her favorite....Cooby Dooby Doo Air r U?

Sissy with her "Bubba"
Laughing at her Daddy about something!!!
Watching airplanes...Fly!
Just wanted to say Hi!
It is hard to eat a chip with an IV and board in the
way!! She still managed! =)

Sunday, August 16, 2009
I forgot how much I HATE scchool shopping! Dustin is easy right now and of course never complained! Chelsie on the other hand....WOOWEE mom if I was like that at age 12, I am SORRY!!!! =)
We are back up at the hospital and Brooke is playing and looking good! Bo said the doctor came in this morning and said that her numbers have gone down some and she will let Dr. Kaufman look at everything and decide what measures he wants to take this week...either keep her on IV meds or I am scared to say this too loud so I am going to whisper...shhh lets us go home on oral meds...shhh
So we are hanging out for awhile together before Bo heads home with the kids. Tomorrow is orientation at schools so Jessica will be taking them for me. Wednesday they go back for the year! Where has this summer gone?
We spoke with Mr. Nelson and Sophie may need to go back in to surgery tomorrow (may have a leak) so PLEASE keep her and this family in your prayers!

7:18pm
I am home with the other two kiddos! =) We have to do some school shopping tomorrow and then up to DC. When I left Brooke, she was sleeping good and Daddy was trying to take a nap with her. So I will update again tomorrow when we get back up there! Thanks for the prayers!
P.S. My dad made it home, he does have a bloodclot in his lung that they are going to watch....his chest pains stopped and kidneys are ok. Please keep them both in your prayers!

CT results are in...
They were NEGATIVE!! Yea This the best news! Now we wait and see if this med works and brings her numbers back down to her norm or even better undetected! The bad news that takes 3 to 5 days! So we are just hanging out....

....from Georgetown
We are back from the CT and we did not have to be sedated. We were waiting for the doctor to get there to sedate her and she fell asleep in my arms. So we layed her on the bed and they were able to get a perfect picture while she slept! YEA! Less medication in her little body the better! Way to go Brooke! Mommy & Daddy are so proud of you!
Here is a couple of pictures of her wagon ride down to Radiology...She loved it!

Here she was saying RIDE!!
(I know Danielle she would rather be on the 4-wheeler with you!)
They are going to do what?!?!

Saturday, August 15, 2009
Brooke had to drink the contrast for her CT this am...I was worried but to show you how wonderful these nurses are here...Brooke's nurse asked if she liked lemonade...YES! She said I brought a crystal light to work with me this morning can I mix it with the contrast and see if she will take it. SURE!! Otherwise, NG tube and pumping it in was our other option. She drank 3 eight ounce bottles of that! I know what Brooke will be getting throughout the day now since they want me to cut back on her milk intake! So we are waiting to take a wagon ride down to CT!!
The doctor is thinking and hoping the virus she had something to do with her EBV numbers elevating. Prayers she is right! She shows no symptoms of the EBV virus, which is good news! We could be here a week to two weeks to maybe even three weeks....they have to get her EBV numbers to baseline. which was her baseline of 400! Would love for it to go undetected though!
If EBV goes untreated it can turn into lymphoma and then of course we all know she would have to have chemo therapy! This is the worse senario! This is why they are attacking this so fast and being so agressive. Prayers this medication works and things start going back to normal. The other thing they have to do is lower her immune suppressant medication (Prograf) this gives her body room to fight the virus....then they watch VERY closely for rejection. So we are on a seesaw and we have to try to make it balanced! FUN! =)
God is in control with the whole situation! I am going to say, I think the transplant journey was alot easier than this post transplant journey! But, I have to put my focus on God and know he is in conrol and trust him in all the hills we have to climb! He will get us through each day! I like to look at it like this....people say Jen how do you do it (I hear this alot) I know there are people out there that have it alot worse then me! God only gives you what you can handle! We had a talk and I told him I think I was at my limit for now ;) But he knows and he has to put us through trials and tribulations to test us and see how we uphold! If I focus on the good...this is treatable, Brooke is happy, walking, playing, laughing, talking, flirting, my other two children are healthy, sweet, good kiddos, I have a husband with me and has been from all of this who supports and loves me! I have a huge support group with the BEST family and friends that are willing to help out on the drop of a dime! The best hospital care I could ask for! So yes when I look at it this way....so we have a couple of weeks in the hospital sore bonding time, more time for Brooke to impress and play with her favorite nurses, and meet some amazing families and kids up here!
With that being said, if you could please keep my dad in your prayers, he went in for hcest pain the other night and now they are doing an ultrasound today to check for a bloodclot in his lung! He needs your prayers!
Thanks for supporting our family, caring and checking in! We couldn't do this without you!

From Georgetown...
It is 11 at night and we are starting out first of many infusions! They will be doing a CT tomorrow to check her lymphnodes and look for any masses. The doctor did not feel anything but the CT will definetly give them a better picture of what may be going on.
We finally got to meet Sophie Grace Nelson's parents. I know you have heard me talk about her...she is the beautiful little girl from King George. What a very nice couple! Please keep Sophie in your prayers, she received her transplant this morning and is doing really well!

www.sophiegrace.org

Friday, August 14, 2009
Just got a call from Martha at Georgetown....we are headed back to DC for admission. Looks like Brooke's EBV that we have been watching has raised his ugly head. Brooke's numbers were running 40 to 80 then the last three months it was 400 well they called to tell me it was 2000! So they have to start some IV infustions....we might be there for 2 weeks! URGHH
When is rains it pours. My dad went to the ER last night and was admitted for chest pain and some kidney problems, my kids start back to school Wednesday (No school shopping done) and now Brooke admitted for the second time this week!
Please keep our family in your prayers, Brooke's health, our 12 year old and 9 year old having mommy and daddy leave to go to DC with their sick sister, and my sanity!
We will be directly admitted, so no ER visit thank goodness! Iwill keep everyone updated on Brooke and everything going on! Thanks for checking in and praying for our family! WE NEED IT!!

Wednesday, August 12, 2009
Thank you all for your thoughts and prayers while Brooke was admitted. Though we do not know what kind of virus and nothing really came of our admission....I want to share with you the positives...God has a reason for everything and he knows best!
With that being said...Brooke is off one of her anti-rejection medications and her asprin a day! They were gonig to take her off the one that we went without for a week and her liver numbers went crazy and when I reminded them of that, they changed their mind!
It was so nice to see all of our wonderful nurses! They are the best nurses EVER! Brooke loved their attention they were giving and all the making over they were giving her! She reached out to one right when she got to the floor and of course she took her for a walk and showed her all the fish! It was precious!
So even though we did not get a confirmed virus, or reason for the rash except proabably from the virus....it was a nice visit. It also gave Bo and I some bonding time that we NEEDED!
We have a follow up scheduled for next Thursday I will let you know how things go then! Thanks for your prayers and please pray that her liver still remains happy even off this important medication they stopped!

Here is one of our very boring days...Brooke decided to wear her PJ pants on her head! Silly Girl!

12:15pm
We are discharged.....haven't left the hospital, waiting
on Daddy to come get us! =) God is so good to us!
Georgetown is the best, but it is nice to be at home!

Monday, August 11, 2009
The doctor came in yesterday and said if Brooke did not have any fevers all day yestrday throughout the night and then this morning we were free to go home around 2pm....Brooke spiked a LOW grade fever of 100.6. at 8pm. At midnight it was 96.6, at 4am it was 96.7 and at 8am this morning 97.1. Her fever and rash are gone. However, she did not go all night without one so I am not sure if we will be able to go home this afternoon. She feels better she ate all of her Cherios and some applesauce, drank a 4 ounce juice and now working on her milk bottle. The only thing going for us is the doctor on today is less conservative than Dr. Kaufman! =) Not that he is bad because he is a genius! So we pray we make it home today! Prayers please! =) I am going stir crazy....how did I make it for 3 weeks back in December?!?!?!

1:55pm....
We are back on the Gold Side, which is post transplant. (Out of PICU) We are waiting now to see the GI doctor. Not sure what the plan is. She has not had tylenol since last night and when we got back over here(oh by the way the best room with the big private bathroom) her temp was only 99! So it is coming down and we can only pray it stays that way!
I am not sure why we can't go home. Everything they are doing here we can do at home. Except labs of course. She is on only oral meds, and no hookups. Her vitals are all pretty good...high heartrate. So I will post again when we here from the doctor. Prayers!

Monday, August 10, 2009
First let me send out a very Happy Birthday to Brooke's Auntie (life savor), Jessica! Brooke sends a big hug and wet kisses and a big HAPPY BIRTHDAY wish to you! =)
Brooke still has the fever and rash. It is about the same but looks like it has some new spots on her face. The infectioius disease doctor came in to say it is not chicken pox. He thinks it is viral and just has to run its course...normal kids take 5 to 7 day, immunosuppressed kids longer just don't know how long. We are waiting on the doctor to come in(Dr. Kaufman is off call and now Dr. Little is on) so we will see what she says today. Bo is going to go home today and I will stay the rest of the time with Brooke. I hope and pray it isn't too long.
The great news again, her liver is great and they stopped the Cellcept! Which is amazing! God is so good to us! So when Brooke is back to her norm, we will be on Prograf, Ursodiol, 1/2 asprin, and Bactrim(Mon, Wed, Fri)!!
It has been nice seeing everyone up here at Georgetown! The nurses are amazing and THE BEST! Brooke just loves them and blows kisses to them and tells them bye bye!
She ate really good this morning, one and a half pancakes, some cereal, and drank an eight ounce bottle of milk before breakfast! Little Porker! She is playing with a pink truck and loves to write on the little sketcher toy!
So we just ask for prayers that God gives these doctors the wisdom to know what is going on how to treat and pray that we will be all better soon and out of here ;) Brooke is an amazing little girl and has been through so much in her little life! I am so proud of her and her fight! I wish at times I could take it all away from her and be the one going through it all, but God has a plan and he is right beside her and taking care of her. It definetly is making her one STRONG INDEPENDANT little girl!
Thanks for the comments and prayers!

Sunday...
Bo operated on the battery charger to the computer and we are finally up and running! I was texting my mom and Chelsie would log on and update for me....just realized she was deleting previous messages. =)
So Brooke's fever is back some....it is low grade but this am it was gone. Dr. Kaufman does not think it is chicken pox. However, it is some kind of virus because her white blood count is down. They started an oral antibiotic so we shall see what that does by tomorrow.
By the way, they have stopped one of her anti-rejection meds (Cellcept). So if anything comes of this visit that is good! =) Her EBV and CMV have been 400 for the months of June, July, and Monday....so this should help make those undetectable.....we will see. Her liver is GREAT! Best it has been in a long time! Wonderful news! God is Good to us and is with us! Prayers they find out what this virus is, treat it, and let us go home really soon!

August 9, 2009
Brooke dosn't have a fever. Her IV messed up and they had to remove it. We are now wating on infectious disease docter to come in and tell us if her rash is chicken pox or an allergic reaction to the zosyn. We are just sitting back and watching scooby-doo for the 50th time! Wow she loves him! prayers that it is an allergic reaction to the zosyn and maybe with no fever and labs all being negative we MAY have the possibility of getting out of here! Wishful thinking maybe but God dose wonderful things :)

Georgetown Plans...
So I was instructed to not give Brooke any Tylenol....if her temp goes to 100.5 or higher I am to call the transplant coordinator and make a trip to DC. She has not had any Tylenol since 10:30 last night and her temp today has been normal! Prayers it was only a virus! So we see what the lovely weekend has in store for us....

August 7, 2009
Yesterday Brooke was running a fever. At 4:00 my mom called me to tell me it was 101.5 under her arm! I called her pediatrician and they saw me right away! What a fabulous group! Dr. Richman and Dr. Van Horn and their staff are the BEST! Let me tell you if you want the best pediatrician in town these are the ones! Anyway, they ruled out ear infection....chest and throat were clear and she tested negative for the flu.
Last night around 10:30 she had a temp of 100.7. I gave her some tylenol and this am at 5:30 it was 97.9! So I am praying it stays down and no hiccups this weekend! I will be calling Martha, transplant coordinator, making sure they don't want any labs or see her. When I spoke to her yesterday she said to go to pediatrician and rule out the ordinary.
Prayers Brooke is over this virus or whatever it was!

August 4, 2009
Another great day at Georgetown! We got to see Dr. Rechtman, whom we have not seen since February! She said Brooke looked great and there were no concerns! She did say, however, that we need to cut back on her mild intake! OOPS! She said you don't want her to get fat! I thought we did! That has been our plan all along! Now she has gained alot and she wants me to give her water instead! This will also help her intake with food....Not that she doesn't eat enough in my book....all that sausage gravy momma's been feeding her is what I think the weight gain came from!
They called me right away last evening...of course this is not of the norm so I panicked and again it was good news! She said Brooke's labs looked great and no changes! Her EBV and Cellcept labs were still pending though!
So thank you for your prayers! God is continuing to Bless Us!

July 24, 2009

GREAT NEWS!!!
Martha just called and said they are making changes to one of Brooke's medications...Her Cellcept (one of the anti-rejections medications) is being cut back from 3 times a day to 2 times a day! WOOHOO!!! This is fabulous news.....how nice when she will be down to just her Prograf! I am just very happy that she is doing so well!
God has and continues to bless our family each and every day! She is growing so much and makes us laugh ALL the time! She is such a blessing to us!

July 23, 2009
Nothing new with Brooke...just growing and talking and learning! She loves books and for me to read to her! We went to Kings Dominion yesterday and we found that Scooby Doo is her favorite! She goes around saying coooby coooby doo with her tongue rolling it is too precious!
Please continue to pray for Brooke...we go to clinic and labs on August 3!

July 16, 2009
Thank you for all the prayers....Brooke went to Georgetown today for her repeat labs and she gave both her Nanna and Grandma wonderful birthday gifts....They were great!!!
We do not have to repeat them for another 3 weeks! YEA!!! What a blessing...God is so good to us! Thanks again for all the prayers.

July 15, 2009
We head to DC tomorrow morning for repeat labs...please keep Brooke in your prayers that her numbers will be down.
Here are some pictures from Saturday. We visited Grandpa Jimmy & Debbie's house for a day of fishing...Brooke had a great time and says...
Thank You Grandpa and Debbie!

July 13, 2009
We went for labs today and they have already called....not so good. Her labs are elevated. I am sure it has something to do with not having one of her meds for a week! We have been fighting with CVS who says they need an auth from doctor....doctor says they have faxed it....then today I said look I have to have this medication today, her labs are off and she is a liver transplant patient. They said ok and they will get auth tomorrow. Well they sent it to our insurance company and it was denied. I got on the phone with the insurance company and they said CVS sent it through 3 times with errors and it was finally approved on the fourth time.
So hopefully now with her meds when we go back Thursday they will be coming down. Prayers Please!!

July 7, 2009
So we just could not stay away from DC that long...BUT it was a fun trip to DC. My family took a trip to the Arlington cemetary to see my grandparent's grave. We also saw John F Kennedy's grave and the unknown soldier. We also got to see the changing of the guards which was really cool! We also "tried" to go in the Washington Monument....no tickets available....so we promised Chelsie we would get there early and visit it again before school goes back. Here are some pictures of our day....

Pediatrician Visit
We had a great visit with Dr. Richman! Brooke now weighs 20 pounds and 6 ounces! WooHOO we get to turn the car seat AROUND!!!! YEAH! She is in the 25% for her weight, 50% for her height and over 50% for her BIG head
She hit all the milestones she was suppose to be doing! She is doing fabulous! The pediatrician did bring to my attention and asked that I talk to her transplant coordinator, when and if Brooke runs a fever, tylenol is absorbed through the liver....motrin is absorbed through the kidneys. This was very new to me and I did not realize, so I definetly will be putting a call into Martha tomorrow.
So we go back when Brooke is 18 months. However, we do go back to DC on Monday for labs to see how the liver has been vacationing with us. Hopefully, she has enjoyed these weeks off too!

July 6, 2009
We are back from our week of camping....and Brooke loved all the attention and fun! We go today to see her pediatrician for her 15 month well baby visit. I will post later on how that appointment went. I am anxious to see Dr. Richman as we have not seen her in quite a while! Here are a few pictures of our camping trip. I will try to work with the little photos later tonight and get them bigger...not sure why they are coming on here smaller than the rest.
When we got back yesterday we had to go see Nanna and Pappaw....Nanna gave her a piece of corn on the cob which she loved!
Brooke in her 4th of July pageant!
All dressed up and hamming it!

June 28, 2009
Ok we are getting ready for our camping trip...the worse part is PACKING....especially for a 16 month old! We have an All Star game at 1:00 for Chelsie and then off to the campground! I am so excited...I need a week of relaxation with good friends!
Brooke says she is ready too...

June 26, 2009
Dustin finished his All Star games up last night!!! WOOHOO! We have literally been at the ballfield everyday since Sunday! Miss Brooke has been a trooper and LOVES the attention she gets there from all the kids and parents! Now that Dustin's season has ended Chelsie's starts up. Her first All Star game is Sunday!
Here is a picture that one of the parent's took last night at the ball field! Thanks Lisa....

Lab Update...
Ok ready everyone for the best news we have gotten in quite some time......
Martha has already called....must have been excited too! Her labs were very good or how Martha put it...actually they were really really good! Yeah!!! Wait, the news gets even better....we do not have to truck up to DC for....get this a WOPPING THREE WEEKS!!!! Martha said that they are trying SO hard to get this beautiful little one to only once a month labs!
God has once again blessed our family! Your prayers are greatly appreciated! God is so good! I truly do not know how people make it in life without "knowing" Him! I could never make this journey without Him by my side and giving me so much faith!
So truly thank you for your prayers! So not only do we get our vacation with no interuption of going to DC next week but another full week off the following week too!

June 24, 2009
We went to DC yesterday for Brooke's labs...she was a trooper! After we left Georgetown we headed down 95 to meet Aunt Jessica, Danielle and Justin for some fun at Kings Dominion! We had a great time! Then it was to the ball field(my life away from home and Georgetown). When I hear back from Martha I will post her lab results...prayers we get another week off....we are camping next week!
Here are a few pictures we captured from yesterday...

Danielle & Brooke with Brooke's favorite character....SPONGEBOB! or how Brooke says..PumBob!
Danielle and Chelsie....and Brooke's little head
She loved the race cars! UH OH get off the sidewalks!
She loved the Taxi Jam Roller coaster...very surprisingly she didn't liike the Merry Go Round! It wasn't exciting enough for her I guess....you know Brooke she has to do things up! Nothing is slow in her life!

SPECIAL PRAYER REQUEST!
PLEASE KEEP JAIDAN AND HER FAMILY IN YOUR
PRAYERS TODAY! SHE RECEIVED THE CALL
YESTERDAY AND RECEIVED HER NEW LIVER!!
PRAYERS TO THE DONOR ANGEL AND PRAYERS TO
THIS BEAUTIFUL LITTLE GIRL WHO NOW HAS A
SECOND CHANCE AT LIFE!

Prayers for Princess Jaidan....You are an amazing fighter and I am so happy God has blessed you with this new liver and a second chance at life! Hope you have a speedy recovery and healthy new life ahead! Prayers Baby Girl!
Hugs, Jennifer & Brooke

June 22, 2009
Brooke is doing better. Saturday, all she wanted to do is cry, fuss and fight her sleep. Nothing satisfied her....that is until around 6:30pm. We went over to my parents and she had her Nanna....let me tell you it was a whole different kid! I say it was Nanna withdraws...even though she had just been with her Friday. But I am telling you she cried non-stop and fussed from 11:00am Saturday until 6:30pm. why didn't I think about Nanna earlier?!?!?
Her cold seems better. We usually go for labs on Monday but I am working today and will be heading to DC tomorrow morning for labs then going straight to Kings Dominion with all three kids and Auntie Jessica and her two kids!
Prayers for good labs! With me having them done a day later, we probably will not have results until the end of the week. They have to be good and hopefully we will not have to go back for two weeks. We are camping all next week so another week off will be just PERFECT!!!

June 18, 2009
Nothing new to report with Brooke and her liver progress. However, she has developed a really nasty cold. Her nose is running like a river and now has started to cough. She did not sleep very well until last night I gave her some tylenol for her low grade fever and she slept fairly well. She doesn't have a fever today and she seems to be coughing less. I will watch her today and tonight and make a decision to take her to her pediatrician or hold off tomorrow. I have been syringing her nose non stop! Her transplant coordinator said it was ok to take her to her pediatrician and if prescribed something just let them know so they can run it by Dr. Kaufman. She seems to be acting fine...eating and playing fine but Martha said there is a nasty URI going around. So we might be visiting Kids Choice tomorrow. Prayers for Little Miss Brooke please.

June 11, 2009
Martha called today, Brooke's labs look good and there are no changes.....BUT the best news I heard was we do not have to be rechecked for two weeks!!! WOOOOOHOOOO!!!!! Now that school is out I would like my day off with all three kids and now next week I can!
With that being said, I did ask could we resume vaccinations. The answer no not yet...her liver functions are still elevated but stable. So there are not where they are suppose to be but stable and have been for the last few weeks. which is still really good news!
We do not have to see the doctor for an appointment for three months....Brooke is getting there slowly but surely! You know, I do not mind all this running as long as my baby is with me and we are not inpatient! I will do whatever it takes....Kings Dominion is only an hour and a half away from DC so us three kids can truck to DC get labs and truck to Kings Dominion and still get 9 to 10 hours of fun time! I WILL TAKE IT!!!
Thank you all for continuing to keep Brooke and our family in your prayers! God is good to us and has never left our side!

June 4, 2009
OK everybody....We need your help! Brooke was
entered in the WMZQ Cutie contest. She needs your
vote! Please click this link and vote for Brooke's
picture. You will see her picture named....
Miracle Baby!!

http://radiobase1.clearchannel.com/front/Image_Contest.asp?Action=Thumbs&sType=3&filterby=&SurveyID=12282&zx=507&type=Date&Cpage=6

CAST YOUR VOTE EACH AND
EVERYDAY!!!!

June 3, 2009
Martha called, Brooke's liver labs are stable. There are a few that are pending. Her Prograf level, anti rejection med, was slightly elevated so they decreased it from 1.1 to 1.0. I will update when I hear back on the pending labs.

June 2, 2009
Busy Busy Busy!!!
Sorry for the long gap in updating!
My mom and sister organized a benefit yardsale on Saturday. Let me thank each and everyone of you who donated, helped out and organized this event for Brooke. It was a big success!
Sunday, I took Chelsie and her friends to Kings Dominion for her birthday! It was a very nice day, no big crowds and we had a great time! EXHAUSTING tho!!!
Yesterday, I took Brooke to Georgetown for her labs.....traffic was awful as usual...Brooke had spilt her milk all over her....left the lab slip in truck....diaper bag was in truck and Brooke decided to load her pants....elevator door opened with a big wall in front of us (thank goodness it took me back to the first floor and we were able to get off and find another one)....the needle from labs came out(hope they got enough blood)....got home forgot to pick Chelsie up from school :).....cut my finger making dinner...then headed to field for Chelsie's softball game. I was very scared to go but everything went ok from then on. Thank the Lord!
So....now we wait for Martha to hopefully call us today with good news today!!!!

May 28, 2009
Martha, called and said that Brooke's liver numbers are steadily coming down!! =)
Her Prograf was a little high so we are adjusting her dose from 1.3 to 1.1....Her cellcept labs are still pending along with her EBV and CMV. We will repeat labs again on Monday!
When we were getting labs at Georgetown on Tuesday, we saw some of Brooke's nurses. They were very excited to see her! We havn't seen them since out last admission in December! I told them it wasn't anything personal but we were trying to avoid them! They understood!!! They couldn't believe how big she was getting, how much her hair had lightened and how she was waving and talking and blowing them kisses despite the encounters they have had with her! She is forgiving and thankful for all they have done for her and will do for her!
She seems to be doing really well! She is definetly showing us her personality and let me tell you she is going to be a hand full! She shakes her finger and tells you bad bad bad if she doesn't like something, she voices her opinion about things, she is walking everywhere, but she is alot of fun and still have some sweet aspects she shares when she WANTS to!!
I will share one of the precious moments we had. Bo was getting ready to give her a bath because she has had cake in her ear up her nose on her belly hands everywhere...I was laying on the couch and she waived bye to me and said bath...she came back kissed me on the cheek walked over to daddy, came back kissed me on the cheek again and then grabbed daddy's hand and went to the bathroom to get her bath. It was so precious!
So next week I will let you know how things are going.

May 25, 2009

Happy Memorial Day!

We just got back from a wonderful camping trip with good family and good friends! Brooke had a really good time with her friend Carley who camped too! She loved the ducks and geese and learned some new words! goop for goose boom boom boom i think we heard this song 100 times this weekend! She wasn't so sure about the snapping turtle but neither was I! The pool was a little to cold for her and I didn't want to put her in shock! The indoor pool was SO crowded so we went to the playground and played! Here are some pics from our weekend....

Brooke loved this tomato car!
Brooke with her Big Sissy, I asked her where the goose went...she didn't know
Coming back from the pool, Daddy kept Brooke and us girls went and relaxed for a while!

On the way to the pool...Amanda thought is would be good to sit in Brooke's car seat!!
My favorite picture of the weekend!
Gracie, who now says Dustin is her boyfriend! It was so cute watchinig her flirt with him!
Joey took the boys out for some fishing too!
Reggie and Bo took the boat out fishing...I think two fish came back with them...
Dustin enjoying his watermelon after a long day fishing!

Brooke had gotten her bath and was ready for bedtime.
Here is the snapping turtle....she stayed back but wanted to see!
Sissy was so good and would take Brooke to feed the ducks and goobs! : )
Chelsie getting ready to fish...
Sissy took her down the slide
in the school bus....
They were sharing hugs and kisses!
Brooke and her friend Carley had a lot to talk about! I just wish I knew what they were saying! It was so cute!

May 20, 2009
Martha called and said Brooke's liver labs looked good! Her Cellcept, which is one of anti-rejection meds was high. They reduced this last week but it is still high. They are not going to make any changes right now but will repeat labs again next week. She said Brooke absorbs her medication differently all the time! My comment was yes it is either really high or one small change and it is really low. She said yes Brooke is an extremist! So I commented absolutley and has been from day 1! Isn't she going to be a fun one come those lovely teen years!
Thanks for your prayers and hopefully next weeks labs will be improved and where the docs want everything.
This weekend, Brooke will be taking her first camping trip! We are staying close to home (Wilderness Presidential Resort) just because I am not comfortable going too far right now. So hopefully she will enjoy her first camping trip and I will post lots of pictures next week!

May 19, 2009
First, I want to take a moment and thank everyone who came out and supported the concert on Friday night! It was a lot of fun and a huge success! It was so nice to see so many kids out and supporting Brooke and our family! A very special thank you to Kyle for setting this up and getting everything organized! Rock the Burg was there and you can click on this link to look at pictures and information! Thanks to them also for supporting our family and promoting these bands!
http://www.rocktheburg.com/ the pictures are located at this link...
http://rocktheburg.com/coppermine/thumbnails.php?album=3
Thanks to the owners of the Not the Same Old Grind! A wonderful family! Thank you so much for opening your business for this fund raiser for Brooke! We greatly appreciate it!

May 15, 2009
A benefit concert will be tonight at 6:30 p.m. at Not The Same Old Grind in Orange. Proceeds will help raise money for Brooke’s liver transplant. Bands performing are Numb Incision, Serve Chilled and Prime Devine. Cover is $3, and all other donations will be much appreciated.
Hope you can make it out....I will have Brooke there for a little while.

May 13, 2009
Thank you all for your prayers for Justin....he finally had his surgery around 8:30ish and was back in his room around 10:30. He did a really good job! Let me tell you....he has a HIGH tolerance for pain! When I left the hospital around 11:30 last night he was resting comfortably.
Spoke with Jessica this morning, he woke up around 3:00am in pain they gave him some medicine and it helped alot. He has been out of bed to use the bathroom. Very hungry and wants to eat....getting some ice cream for breakfast! Way to go Justin! What a trooper!

May 12, 2009
Real Quick.....just wanted to post and have everyone praying for my nephew, Justin Wallace. This is Jessica's son. He is in the emergency room right now and will be heading to the operating room. He has appendicitis. Prayers for this little fellow and his parents would be greatly appreciated. Things are happening so quick I do not have all details just asking for some extra prayers!
Will update later....

May 11, 2009
The Lord has blessed us once again! Brooke and I went to Georgetown today....we got there around 7:45am....we signed in to have her ultrasound....at 9:30 I told them I had to go get her labs done so i could give Brooke her 10:00am medicine. So we left and went to see Brooke's friend Lorna! No tears once again...she is perfect at drawing her labs! Anyway we went back to radiology where we waited til noon! They finally called us back and we got the ultrasound done. I was suppose to wait around to see what the results were in case she had to be admitted.....I was done! Brooke was done...I took my chances and headed home!
Martha just called and I am glad I headed home.....when I answered the phone the words were I have good news!!!! WooHoo...her labs and ultrasound were both improved!!! They are still going to keep a close eye on her numbers so we are back to once a week labs again.....but you know I will take it! I do not mind giving my day off to spend it with Brooke in Georgetown if it means she is doing good and progressing well! I will take it ANYDAY!!
Thanks for your prayers! I know God is blessing us and I have to keep my faith and focus on Him and know he is in control of ALL things!

Pictures...

Happy Mother's Day! (5-10-09)

Happy Mother's Day to all the moms out
there! What a beautiful title to be called
a mother!
You never really grasp the true understanding of a mother until you walk in their shoes! You know the technical term of a mother but until you raise children and nurture them in their day to day lives, you truly have NO idea!
Every mother has a different journey in life with their children. Looking back on my childhood and now raising my three children, things are a whole lot different! Times have changed. It is a very HARD job to step up to! Chelsie being the 12 year old she is and Dustin the pure all boy 9 year old and then my fiesty little 14 month old........WOOWEEE times are very difficult.
Then you look at the beautiful times you share with your babies, the games at the ball field, the concerts and plays at school, the trips to Kings Dominion, camping and vacationing with them ...you know the good always overpowers the bad!!!
I had a quote I found and try to keep in my mind in raising my three kids...
Your children learn more of your faith during the bad times than they do during the good times.Consider it all joy, my brethren, when you encounter various trials. (James 1:2)
As you all know, we have had a few bad times this past year! Looking back though, they don't seem so bad. Rough at times, yes....but I know that my faith and love for God is what made and continues to make my journey a lot smoother. I hope and pray that my children see that and understand that with God by your side and truly giving it all to Him is what makes things so much bearable!
As a mother, I will make mistakes on the path of motherhood. I will not always have the right answer or the right decisions. Their will be errors and regrets, but I hope and pray that my children learn and see that with a loving and forgiving God by our side, we can make it in this world today.
Keep your faith and focus on Him....your children will be better in knowing and living their lives through this!
Happy Mother's Day!

May 8, 2009
Brooke's ultrasound is scheduled for Monday. She does not have an appointment, she is just an add on that day. So we have to be there by 7:30am and hope they can get her in quick when they open at 8:00am. Then we will go have labs. Prayers things run smoothly and this will not be an all day event!

May 6, 2009
Martha just called to inform me of the meeting that took place this morning with the doctors. Looks like they want to have an ultrasound done next week. They want to make sure the vessels around the liver are working correctly and everything is flowing the way it is suppose to be flowing. They are going to try to get that scheduled for Monday since we have to be up there for labs anyway.
When I know more I will post....Prayers Please!

Home Sweet Home (May 4, 2009)
Once again, God has blessed us and is good to us! Brooke's numbers were down today so they let us come home! They want us to come back up there on Monday to repeat the labs and see if they continue to come down. So she could still use some prayers! We just wait for a week and see what happens....they are not sure what is going on?!?!? She is fighting the EBV virus and those numbers are down and we will know if they are still coming down from todays draw probably Thursday or Friday. The doctor did say that they meet on Wednesday to discuss post transplant patients so she will be adding Brooke to this meeting and see what everyone wants to do with her! Thanks for your prayers! It was so good to be told you can go home!

Prayer Request!! (May 1, 2009)
Ok now Brooke needs your prayers!!! The transplant coordinator called and said that Brooke's liver numbers were elevated and have been increasing a little every time since they stopped the steroids. So the plan...Monday she goes for labs and sees the doctor. I have to hang out until the lab results come back. If they are still climbing we have to be admitted for a liver biopsy. Please keep her in your prayers and pray that these numbers go down! I really don't want to have another biopsy! Prayers, Prayers, Prayers!!!!
Her EBV numbers are a whole lot better! They went from 400 to 80!! WOOHOO....one good thing one bad thing....This rollercoaster is not fun! Sure is a rough ride! But, it is in God's hands and we just see what he has planned for us!
We have my parent's 50th wedding anniversary party tomorrow so atleast we are here for that and they didn't admit us today! We love you and thank you for all your prayers! I will update on Monday....I will pack my bags and computer just in case!

Two Prayer Request!!!!
I am asking you all to keep two of my "liver babies" in your prayers!
Xander has been admitted to the hospital. His livers counts are elevated along with some other things going on! This little guy is having a rough go and could use some prayers! You can go to his website for updates... http://www.colbykids.blogspot.com/
Also, Emerson! Little Eme is really fighting hard for her prcious life and she and her family could really use some prayers! We all know prayer changes things and God is in control of ALL things! Her site is... http://www.cotaforemersonw.com/
PLEASE keep these two in your prayers today and this week! It is nice to know when you are going through the rollercoaster of liver disease and all the ups and downs of this crazy ride we are on that you have people out there who care and truly keep you in their prayers! God has been so good to our family! I know you have prayed for Brooke and continue to pray for her and our family! So please keep them in your prayers and sign their guestbook and let them know! I know, with Brooke, it was SO nice to read words of encouragement and know even though I was in the hospital people stayed by me..via computer (isn't technology great!) Words of encouragement, love, prayers and knowing you guys cared is what kept me going!

April 22, 2009
I actually have my regular day off! WooHoo! Brooke and I do not have any doctor appointments scheduled, no labs to get, no interviews :) , no errands to run! I think we are going to spend the day in our pj's and enjoy the day together! We have not had a day like this in quite some time! I will post some pictures of our day later on! Hope you have a blessed day!

April 20, 2009
The Free Lance Star is scheduled to publish our story in tomorrows issue.
Also, tomorrow morning at 5:30, 6:30 and noon, channel nbc29 news, will be airing our story and promoting organ donation awareness!
If you can not receive these stories via newspaper or watch on television....you can pick up the links under news media above tomorow morning when I post it.
Thanks again for all your support!

April 17, 2009
Martha just called and said that Brooke's EBV was elevated. Her levels were 40, 80 and now 400. They think with the decrease they made in her Prograf to only 2 times a day this should take care of it. So on Monday, April 27th, we will have repeat labs and check to see if her EBV has gone down. Please keep Brooke in your prayers that this will be the case!

April 16, 2009

SPECIAL PRAYER

REQUEST!

As many of you have been following Emerson, "EME",
please keep her in your prayers today! She got the
CALL! She is having her transplant now! What
wonderful amazing news! She needs your prayers as
does her family! Brings back so many memories of a
few months ago! She is a FIGHTER!!!! God is in control
and we need to go to Him in prayer and ask Him to
watch over this little angel!!
Prayers Prayers Prayers!
http://www.cotaforemersonw.com/node/35
As we keep Eme and her family in our prayers, please
say a special prayer for the donor family! I can not
imagine what they are going through....but their
decision to save another life is amazing!

April 15, 2009
In honor of Organ Donation Month, a friend (Xander's mom), I have met through the journey with Brooke created this magazine cover!
Thank you Blair for doing this! Just PERFECT!!!
Her work is AMAZING!

Easter Photos....
Brooke really enjoyed her first chocolate bunny!
She also enjoyed looking for the Easter eggs with her Nanna!
Some really great shots of her outside looking for eggs!
I found one Daddy!
Behind the tree!
Brooke's Aunt helping her get one out of the flowers!
Brooke and her big Sissy!
Mommy with her baby girl!
Brooke with her Big Brother!
Brooke's first Easter egg dying adventure....notice the
cracks....I think she dropped it more than she colored
it!

Promised Photos and videos.....
I could not get the video of her walking to upload here. You can find it under the videos tab with the rest of her videos! Check out that smile at the end when she knows she has completed the walk to the end! She is so precious and hitting so many milestones! Thanks for your prayers!
Brooke with her two Big Sisters....
Oh Boy! My Little Pole Dancer!
Brooke hamming it up! Check out that smile!
Brooke walking around Kings Dominion...No Hands!
Brooke's trip to Kings Dominion with all her buddies!

Lab Update....
So Martha called and said the powers at be had a little pow wow and discussed BMW! So Dr. Kaufman said he wants Brooke to take her Prograf two times a day and the Cellcept three times a day. Both of these meds are her anti-rejection medications. I am really nervous about this the last time she took Prograf 2 times a day she rejected. However, she was not taking the Cellcept at that time. So please keep Brooke in your prayers as they are making some changes. They do not want to recheck her labs for two weeks. They said her labs were better this week compared to last week labs.
Also, Martha, called my pharmacy/insurance company and do you know after everything I went through yesterday they told her they did not know if they could do the compound formula for the liquid Prograf ?!?!? I wish they would just let us keep going through are CarePlus in DC who knows what they are doing and works with Georgetown daily! They were able to ship my Cellcept and I do have that in hand tonight! So I will be back on the phone with my insurance company tomorrow!

April 14, 2009
Brooke is definetly walking I will try to post video later tonight! I have had a busy busy few days. Friday we went to Kings Dominion and that is where Brooke just wanted to walk all over the place. She did not want to hold my hand! Then it was out with the girls for my birthday! Saturday we made Easter candy all day and then I had a baby shower to go to. Then we had a little pizza gathering at my parent's for my birthday. Sunday was church and then a cook out at my parents. Brooke had so much fun looking for eggs...I will post pictures tonight also! . Then yesterday we had to go to Georgetown because Brooke's labs were not so hot last week. Prayers today they come back looking better. Also, yesterday I was on the phone all day long with my insurance company fighting with them trying to get Brooke's anti-rejection medication! Remember when I had that issue a couple of months ago and had to pay for it out of pocket and they assured me they fixed it and I would not have that problem again?!?!? YEAH RIGHT! It is so frustrating that any parent would have to go through what I went through yesterday! I have already been through enough and almost lost my baby, I will not lose her to irresponsible insurance employees who didn't put in the long term authorization for her anti-rejection medication and would not release my pharmacy to ship out her medication! To say the least I was on the phone all the way up to DC, on the way back and when I got home....my pharmacy shipped it out and I should have today. NO parent should have to worry about getting their medications! I pay my insurance company, they are not a free service, so in return I expect good service not what I am receiving!!! All they would say is I am sorry for your frustration! My frustration, FRUSTRATION, is not the word here! Put yourself in my shoes....what if this was your daughter and you were fighting your insurance company to release a medication that literally saves your baby each and every day and she can not go with out it and they are telling you they can not guarantee anything!?!?! To say the lease yesterday was not a very good day! I hope it gets better when the transplant coordinator calls....Good Labs! Good Labs! Good Labs!
I will post as soon as I have information from Martha! Until then we pray!

April 8, 2009
Yesterday I had to go to Rappahannock for Chelsie's school ball game. My mom kept Brooke. When I got there Brooke was so excited to see us! Had been a long day for her.... She saw Chelsie and I and let me tell you she can stand by herself now and then she walked 15 to 20 steps to where I was at! I was so excited for her! Chelsie has a double header tonight but if we get home at a decent hour and Brooke is in a good mood, I will try to video and upload it to here. She is doing so good! I will get the kids to help me this time....I will have Bo go do something else!

April 7, 2009
12:14pm...Brooke's labs are back and her Prograf (anti-rejection med) level was slightly low...7.2. They want hers between 8-10. This, they think, also caused an increase in her liver function tests. She said it was slightly and the increase in her Prograf med should take care of her levels...please pray it does and no rejection stuff is happening. I know her liver tests do like a higher Prograf level so hopefully with this increase everything will go back to normal. We repeat labs on Monday so I will know more then....until then it is sofball and baseball games tonight, softball game tomorrow afternoon, thursday travel ball practice for Chelsie and Friday....Kings Dominion with kids and then back for a night out with some friends I will need a night out after this busy week! I think I actually have Saturday off too...maybe I can get my hubby to take me out to a nice dinner since it will be my birthday....
You know a year ago today Brooke was having her Kasai procedure done at Johns Hopkins! Wow what a difference a year makes! God is good and has blessed our family so much in the last year and continues to bless us! Thank you for your prayers!
Remember when I said bare with me that this is my busy season!! Wow Saturday we were at the ball field from 7:30am until 11:00am and then back at 4:00pm to 8:30ish. Dustin played his first little league game of the season and they won 10-0! He even pitched an inning! Chelsie's game was cancelled so she had to play her's on Sunday at 1pm. Sunday consisted of church, then to my sister's for her surprise birthday party and then Kings Dominion...Bo brought Chelsie down right after her game. She won 18-8!
Yesterday I got up and left the house by 9am and took Brooke to Georgetown to see Dr. Little and get her labs done. She weights 18 pounds 2 ounces...slowly but surely she might hit 20 pounds!! We are trying! Everything looked great and depending on her lab results today they might be taking her off one more medication! WOOHOO! We then came back to Fredericksburg, stopped by Daddy's work and picked up Chelsie's softball gear she had left in the truck headed to school to drop off and then she had a game at 6pm for little league. They won 6-2.
Then today she has a school game at Rappahannock and Dustin has a little league game at 6pm! So we are stretched! But I would never have it any other way!
As soon as I hear from Brooke's transplant coordinator I will post what her labs are!

April 2, 2009

It was so nice having a day off this week and not have to go to Georgetown! However, Brooke of course was the highlight! I had an interview with The Free Lance Star editor. She is going to do a story on Brooke and Jessica. April is National Organ Donor Awareness month so I am promoting organ donation as much as possible this month! The story will publish sometime in April, I will post when I know.
Brooke was very fortunate in the fact that she did not have to wait on the transplant list for a cadaver liver! With Jessica being a perfect match and saving Brooke's life we did not have to sit and wait and hope a liver would come available. These families that donate their loved one's organs to save babies like Brooke are amazing! Words could not express what you feel at that moment. We thought we had a liver and spent 2 days at Georgetown waiting to see if it was a go. You are excited to know your baby is going to be tranplanted and saved but at the same time sadness to the family that lost their loved one. Then you have the feelings of respect and love for what they did for you! This, of course, fell through and the liver was too big for Brooke's body. Some other family was given the gift of life that night!
Decide now to be an organ donor I have a page at the top that states Organ Donor. There are links and information on there that you can click to sign up to be an organ donor! There are pictures of Brooke's friends we have met on this journey with Brooke that needed or will be needing a transplant. Your thoughtfulness today could be the one to save a life tomorrow! You never know what tomorrow brings! Please in Brooke and these other babies honor sign up to be an organ donor today!

March 28, 2009
Martha, Brooke's transplant coordinator, called yesterday and said Brooke's labs all looked really good. There are no changes and we do not have to repeat this week we can wait for two weeks! We also get to discontinue another medication, the Valcyte! Brooke was battling with one of her labs the EBV they like it undetectable hers was at 80 and then two weeks ago it went down to 40 and this week they said it was almost undetectable! WOOHOO her little body is fighting it! This medication is one that helps and they feel they can stop it. So hopefully when we go back for labs not this Monday but next Monday it will be gone and all will be great! So we are down to 4 regular meds and then the antibiotic on Mon, Wed and Fri! A big difference from our first couple of months of transplant! Thank you for all your prayers and support!

March 26, 2009
If you visit Brooke's videos please watch the one where Daddy's is trying to help Brooke walk. I think nine years was a big gap. He forgot you have to let go but stay by the baby's side to catch them when they go to fall! Then there is the other video where she is walking with Nanna...she showed Daddy how you do it! Hope you enjoy...really shows how big Brooke is getting and how well she is doing post transplant!

March 25, 2009
Still waiting on lab call back...Just called her transplant coordinator and looks like she is out of the office until tomorrow....I will try to get someone else and see if we can get results.
Jill one of the nurse practitioners called (Wonderful Person) She said Brooke's labs look relly good and no changes. She did however ask if Brooke had some diarrhea going on....yes for almost 2 weeks now...she said she could tell that by her labs. She said normal is 22 and hers is reading 20. So we don't get a week off, I have to take her to DC on Monday for repeat labs and that number has to come up or they will have to discuss other options...Prayers that the diarrhea stops and she gets better with her labs!

March 23, 2009
Brooke's transplant coordinator is aware of Brooke's vomitting and diarrhea and will take that into consideration when her labs come in. She will probably call around 3:30ish to let me know how they look. Prayers until that phone call please!

March 22, 2009
Brooke hasn't thrown up anymore and is drinking pedialyte like crazy. I pray her labs all come back good despite her diarrhea and stomach stuff. Hopefully her body is still absorbing the medicine! She acts fine and no fever so that is a positive! Prayers please!

March 21, 2009
Please keep Brooke in your prayers she has been battling diarrhea off and on for two weeks and now she just threw up all over the place....I will watch her closely this evening/night....hopefully I no not find myself visiting DC! We have labs on Monday so hopefully they will all be good too!

March 19, 2009
Brooke took 5 to 6 steps all by herself yesterday! She even got a little shakey but balanced out and took another 2 steps! WOOHOOO Brooke! We then went outside to enjoy the weather and she holds on to my pants leg and walks around she always takes me to the doggys where they and Brooke bark at each other.

March 13, 2009
Martha called to say Brooke's EBV went from 80 to 40! Way to go Brooke! WooHoo Thanks for your prayers!
Hope everyone has a great weekend....around here try to stay dry! :) A big difference from last weekend! Looks like a catch up on the movies weekend.

March 10, 2009
Martha called and Brooke's labs are doing great and there are no changes and Brooke does not have to return for repeat labs until 2 weeks! WOOHOO. I am actually going to get a day off and guess what Brooke and I are not going to do anything and we are going to lounge around and have the day just her and I! Thanks for your prayers!
Not sure what happen to all my guestbook signatures, they have all disappeared! The site is working on this and assured me they are there and they are working on this problem as other people are having the same problem.

March 9, 2009
9:03pm...Another reason I love to see Dr. Kaufman...he has already called to tell me that Brooke's liver functions are beautiful! YEAH!!! He wants her to stop the prednisolone, the acid reflux, the nystatin and her magnesium! YEAH!! WOOHOO! Depending on the other labs her Prograf levels her Cellcept levels and her EBV we will see what else he is going to change. If her EBV levels are going down she may get to discontinue the Valcyte too!
So now this is her med schedule....
6:00am Prograf, Cellcept and Ursodiol
7:00am Valcyte and on Mon, Wed, Fri she gets her Bactrim
2:00pm Prograf, Cellcept and Ursodiol
7:00pm 1/2 baby asprin
10:00pm Prograf, Cellcept, Ursodiol
Not too bad given she use to be on 14? I think meds!
He also said depending on Prograf and Cellcept levels she may be able to come off the Cellcept or go back to two times a day. She has SO come a long way! Please keep Brooke in your prayers that these changes will work with her little body and NO rejection! I will keep you posted!
6:48pm...Brooke's appointment went really well! It was so nice to see Dr. Kaufman outpatient and since we have not seen him since our inpatient stay in December it was even better! He was very impressed how well she looked and how well she was doing! He was very impressed how hydrated she was and how much weight she had gained since the last time he saw her. Her blood pressure was really good with no meds!!! He also, pending on her lab results tomorrow, is going to discontinue her prednisolone, acid reflux med, and her magnesium! He also was talking about decreasing her Prograf and Cellcept to a lower dose too! I was so excited and happy to hear this!
I will say at first I was a little skeptical because she has done so well since December and explained that to him. He said that most "babes" who have early rejection like Brooke did can have the reduction in meds and be at a 6 to 7 level most of the time do just great. So we will see....pray pray pray that this will be the case and NO rejection! He had other explanations too but this man is so smart that I trust him with everything and know he knows best and know whatever decision he makes is going to be the best fro Brooke! Another reason I was glad to see him!
Oh and her weight....she is still at 17 pounds 14 ounces but the last time according to their scales was 17 pounds 13 ounces....still not gaining a whole lot of weight but in his eyes doing just great! So I will take it. She is moving alot now so it is going to be hard for her to gain too much!
So I will let you know what Martha says tomorrow and if there will be any changes! Smiles....today was such a good day!
What a beautiful weekend! Brooke really got to enjoy the weather! She was able to play with bubbles for the first time, ride her tricycle, go for a walk with mommy, take rides in her new wagon, and ride the four wheeler with her daddy! She had a blast! But let me say she slept from 8:00pm last night until 9:00am this morning! She was worn out!
We are getting ready to head to Georgetown for her appointment with Dr. Kaufman and labs!I pray everything is still looking good and her EBV numbers are getting better! I will post when I get home on her weight and well-visit!

March 6, 2009
Martha called to say that Brooke's EBV labs came back. They were undetectable but now they are at 80. They like them to be less than 200 so they are really going to watch this. We will recheck them on Monday with our appointment with Dr. Kaufman. Please keep Brooke is your prayers!
Otherwise, she isdoing great! She is crawling all over the place, walking around furniture, talking, and enjoying her family! She is truly a doll!

March 5, 2009
Martha called and Brooke's labs were great! Her Prograf again was high so they are decreasing again! But all of her liver functions and other labs were looking really good! Her EBV was still in normal range the last time we checked but they like it not to be detected. She was tested on Tuesday but the results were not back as of today! Please pray these have since gone down and there are no issues!
We had labs drawn on Tuesday and we are still waiting on the results! Brooke's transplant coordinator was out of the office yesterday so I hope she is back today so I will hear something.
We also made a trip to see Dr. Richman on Wednesday for Brooke's one year check up. This doctor and staff are AMAZING! They are so sweet, nice and considerate and just love Brooke! (but who doesn't ) Brooke waved and talked to them it was so sweet!
Her appointment went well, Dr. Richman said she is at the bottom of her chart for height and weight but since Bo and I are short and small frame she is not sure if it is because of her health issues or if she is going to just be petite like us. She wasn't concerned and said she was on the chart and curving. No worries! She is right at 18 pounds! Hopefully she will get some weight on so we can flip this car seat around!
Other than that we are waiting for lab results and Monday we actually get to go so Dr. Kaufman! Have not seen him since our discharge back in December! So excited to see him....he is the best! (Better on outpatient terms than inpatient but he is brillant and amazing!)
So now baseball and softball start so I will be running from ball field to ball field and Brooke will see all her friends and buddies from last year! What a BIG change from last year to this year! God has been so good to us and blessed us so much! So if my posting seems less, it is because I am running around ragged with three kids and trying to get everythign done in the time I have! So Emma get ready for some playdates with Brooke at the softball field! She is ready!!

My First Birthday Pictures
Thank you Aunt GiGi (my sister) for making such a beautiful cake!
Mommy with her beautiful baby girl...Happy Birthday Sweetheart!
Brooke with her Aunt Jessica! The reason we were able to have a first birthday and celebrate! Thanks Jess!
Momma Frack stealing some birthday kisses!
Daddy's girl! Wow, does she ever have him wrapped around her little finger!
Pappaw or as Brooke calls him "TeeTaw" with his pride and joy!
Presents Galore!
All of Brooke's buddies helping open her presents!
Friends & Family...Thank you for all coming out!
Brooke's friend Carley, what a sweetie!
Brooke's friend Gracie! This little Angel has been so sweet to Brooke and I during this journey! She has really cared and blessed our family! Amy you truly have a sweetheart and special lady right here!
Princess Leslie...look at those eyes! She looks so much like Chelsie!
Brooke's buddy Caleb! This little guy is the cutiest!
This is Brooke's cousin Kate...she is such a sweetie!
Brooke's other cousin Joshua, eating some chicken! Too cute!
The most amazing person who got this together and did all the hard work! My niece Amanda!
Brooke trying to blow out her candle!
She loved her yummy birthday cake!
Aunt GiGi with her two Princess granddaughters!
Brooke's cousin Justin and her big brother Dustin!
Brooke's cousin Danielle with Miss Brooke!
My nephew Corey! You were a big help at the dance thank you!
More family that came out to support us...Thanks guys!
If you can't tell by now...I come from a BIG family and have lots of friends who have been on this journey with us...you guys are amazing!
Brooke's Princess Pal and my nephew David! Thank you guys for always being there you two are the best!
Brooke and I talking to my good friends from work, Becky and Kathy! Thank you very much for coming out but thank you for always being so supportive and there for me always!
Grandma Patti, Bo's mom. Thank you for coming out and always being there for Bo and I and the family! You are the best!
We also have my Pastor in the background! You,Summer and Caleb are very supportive and we so appreciate you guys being there for us! We appreciate all you have done for us and continue to do for us!
Then there are the roses! Amanda , my amazing niece got me a dozen red roses, Jessica, Stacey and my mom a dozen roses each! See what I mean when I say she is AMAZING! She has been there for me from day one when she spent the night at the hospital with me when Brooke was born so Bo could work and everyday since! Thanks Amanda! I love you!

March 3, 2009
Wanted to send out a very special thank you to all of you who attended Brooke's birthday party and benefit dance. Saturday was such a beautiful day and we had so much to celebrate! I have never seen so many birthday gifts for one little girl! Thank you!
The benefit dance was a huge success and it was so nice to mingle and dance and meet so many amazing people who have supported and helped us through this journey. Thank you to John, owner of Robinson's Tavern, for allowing us to celebrate there and DJ JOJO! You guys were awesome! The waitresses were wonderful and we appreciate all you did for us! My many friends and family who helped at the dance and all you guys still do for our family!
I would also like to send a very special thank you to Amanda, my niece! She took care of all of us at the birthday party and then helped out so much at the dance. She is the one who got all this started broke the ice at the dance and we are so appreciative and love you for doing this for us!
I don't have pictures of the dance, too dark, but I will post birthday pictures as soon as I can find my camera! :)
P.S. We are headed up to Georgetown today for labs, I will let you know as soon as I hear how her labs are! Prayers they are still looking good!
Thank you again for all your love and support! You guys never cease to amaze me! We love each and everyone of you!

Benefit Dance
My niece's friend who works with her at Robinson's Tavern put this flyer together! She did an awesome job! Thank you very much for doing this!
So I hope you guys will come out and support Brooke and shake your tail-feathers with all of us! Should be a lot of fun!

HAPPY BIRTHDAY BROOKE!
Today is Brooke's first birthday! It is so hard to believe this day 1 year ago, I was being rushed in for an emergency c-section....what a day that was! When you have an awesome doctor like, Dr. Leonard, it was all calm and turned out just fine! She is the BEST!

Here are some pictures from the past year! Thank you for all your support throughout this year and journey we have been on. You guys are amazing!

I AM ONE!

Liver Families Awareness Month
Please take a moment to see the many faces of ones who have been touched by liver disease. These are some of the amazing people I am blessed to have met through the liver families support group!
Organ donation is such an under-discussed topic. Please watch this montage and think about how YOU could make a difference.
http://www.onetruemedia.com/otm_site/view_shared?p=818437f6e31b0b1c018ff7&skin_id=601&utm_source=otm&utm_medium=image
So many reasons to be an organ donor! I am....sign up today!
http://www.organdonor.gov/

February 25, 2009
We went to Johns Hopkins on Monday and it was SO nice to see Dr. Schwarz and the staff there! They were so nice and so sweet! They were glad to see Brooke and see how well she is doing from the last visit which was back in the summer! A BIG DIFFERENCE!
While we were there we had a developmental assessment and she is average with her mental skills and a little below average with her motor skills. They said it was nothing to be alarmed about with the year she has had! Not what a typical one year old experiences! I have to say the lady who performed the testing said that Brooke was the most polite one year old baby she has ever met! Everytime she gave her a toy to see what she would do with it, Brooke would say tank you! It was precious!
One of the test they did was take a bunny rabbit and placed it under a coffee mug and then pushed it along with another coffee mug that had nothing under it towards her. It was to see if she remembered which one the bunny was under! She loved that game and passed with flying colors. I just thought it was the cutest thing watching her!
I spoke to my mom this morning and she said Brooke has taken off and is now crawling forward! So now let the fun begin! Should lose some weight now, running after her!

Benefit Dance

The Brooke Wallace Trust Fund
Cordially invites you to attend our

Dance Benefit

Honoring; Brooke Wallace, a one year old who was born with a rare liver disease that resulted in a liver transplant on October 9, 2008. Her aunt, Jessica Wallace, generously gave part of her liver to Brooke and saved her life!

SATURDAY, FEBRUARY 28, 2009
9:00PM-CLOSING
Robinson’s Tavern
32345 Constitution Hwy# A (Rte 20)
Locust Grove, VA 22508
(540)854-7474

Music Provided by: DJ JOE LOCO

Cover Charge: $10.00

All proceeds will go towards The Brooke Wallace Trust Fund.
The fund was set up to offset some of the medical expenses associated with her rare liver disease, transplant, and continued life long medical care.

Please join us for an evening of dancing, fun and friendship!
Thank you in advance for your support!

Please feel free to visit Brookes’s website,
www.brookemariewallace.com to become familiar with her condition and get up to date information on her progress.

Brooke's first Birthday Pictures!
Brooke getting ready to play some golf!
I am turning one!
The Princess she is!

Priceless!
She loved her cake!
So did her toes!
My favorite! There is something about a black
and white portrait!

February 18, 2009
All of you have so touched our life this past year, words can not express how greatful we are to each and everyone of you! You have supported us, loved us and been there for us no matter what! We would like to extend an invitation to you to attend Brooke's First Birthday Party! You have been a part of this journey with us and we would love to have you come celebrate her first year! So here are the details and please let me know if you can make it so I can make sure I prepare accordingly! We love you and thank you and hope you can be a part of this celebration as we have so much to celebrate!

"Hear Ye! Hear Ye!"

Her Majesty, Princess Brooke of
the house of Wallace requests
your presence at the celebration
of the first year of her birth, at the
castle: Robinson’s Tavern and
Grill on Rte 20, February 28th,

5:00pm, RSVP to Queen and King
(540-661-7554) or by email
(wallacefamily@vabb.com).

There will also be a benefit dance
to follow at 9:00pm, so please
come shake your tail feathers with
Princess Brooke, family and
friends!
(I will post dance flyer either this evening or tomorrow with more details)

February 17, 2009
4:00pm.....Oh my almost forgot Brooke is weighing in at 17 pounds 13 ounces she has gained roughly 7 ounces since last Monday! All that sausage gravy and biscuits my mom is feeding her every morning!!
3:30pm...Brooke and i just got back from Georgetown. What a busy day I left the house this am at 8:00am had Chelsie at the doctor by 8:30 and she was tested for strep. She tested positive! So I took Brooke to Georgetown and she also got a prescription just as precautionary measures. Well as I was typing this Martha just called and Brooke's labs are beautiful! ALL of the labs...I mean liver, white blood count, prograf...EVERYTHING!! I am so excited I can't type!!!!
Her white blood count was 20 yesterday and 8 today! AMAZING! I know God answered our prayers and took care of things! So thank you very much for praying for Brooke! Martha said she is a funny little girl! One minute her white blood count is 20 now 8 her prograf is 23 now where they want it (Sorry forgot to ask the number). So she is just doing things on her terms it looks like! Scaring me to death and giving my lots of gray hairs but I will take them as long as she is ok!
So we do not have to go back to clinic or repeat labs until Thursday. We do have to take a trip on Monday to Johns Hopkins for a development testing appointment. Then we will see Dr. Schwartz after that appointment. Which should be really nice as we have not seen them at Johns Hopkins since maybe June or July?!?! I am very excited for them to see our Precious Brooke all PINK and not yellow!! So another busy week!
Thanks again for the many prayers, comments, texts, love and suport!

February 16, 2009
4:30pm...Martha just called and Brooke's white blood count is elevated so it is suggesting something bacterial is growing. They were going to have us go back up and be admitted but now they are just going to have me take her back up tomorrow to see if it is higher than todays labs. If they are, we will be admitted. They also want me to take Chelsie to the pediatrician tomorrow morning and have her tested for strep. This way if that is positive they will have a better way of treating Brooke. Please keep her in your prayers.....I gave her tylenol at 3:30 and her temp right now is 98.5 so it has come down with tylenol.
8:00am.......Well, I was off today to take Brooke for her weekly labs but she woke up at 2:00am fussing and did this off and on until 6:00am. I fed her, changed her diaper nothing helped. She happened to roll over on me around 6:00am and she felt warm. She is running a fever of 101.6! She is not feeling good at all. I put a call in to Martha and I am waiting for her to call me back. It looks like it will probably be a trip to Georgetown but not for just labs! Please keep Brooke in your prayers today and as soon I know more I will let you know.
She has done so good it has been almost 2 months with no trips to ER or admissions! Chelsie was sick yesterday complaining of a sore throat so I pray it is something easy and nothing with her liver!
Prayers Please.....

February 14, 2009
Time is too slow for those who wait, too swift for those who fear, too long for those who grieve, too short for those who rejoice, but for those who love, time is eternity. ~Henry Van Dyke

There is a little more love in the air this Valentine's Day as we have one Special Baby that has filled our hearts with so much love! Hold your kids a little closer today and show them how much you love them and how special they are...Chelsie, Dustin and Brooke are three wonderful, amazing kids and I am so thankful to be their mommy and be able to love them and share my life with them! Happy Valentines Day!

February 11, 2009
Martha called me and Brooke's labs looked really good...all but her Prograf! Her Prograf level was originally 12 and they said that was too high so they decreased her dose from 1.2 to 1.0. Last week they said that change cut her Prograf level in half to 6. So they asked me to increase her dose to 1.1....well her Prograf level this week is 18! Way too high! So we are now back to 1.0! This kid is all over the charts with her Prograf levels and they have no idea why. They say she must be very sensitive to changes. So we go back again next week for repeat labs! They did decrease her Prednisolone to 1.0ml so she is almost off her steroids! YEAH!

February 10, 2009
We went to Georgetown yesterday to see the doctor and get more labs. Everything went really great! Brooke is weighing in at 17 1/2 pounds! They were so impressed how things were going. We wait today for the results of her labs today.
The doctor that saw her had not seen Brooke since pre transplant! She was very happy to see good results and said she was so beautiful she could just sit there all day and stare at her!
I will post when we here from Martha about her labs!
P.S. My friend Stacey and niece Amanda are organizing a Benefit Dance for Brooke's Trust Fund. It will be at Robinson's Tavern on Rt. 20, on February 28, 2009 starting at 9:00pm. All are welcome and please come out! There will be a cover charge of $10 and should be alot of fun! I will post the Flyer as soon as possible! We have a lot to celebrate with Brooke turning one and her wonderful progress she has made! I am going to try to have Brooke there for a little while so everyone can see how well she is doing and see what progress she has made! It is her birthday party that day too so she may be worn out but we will see how things go! She will definetly be the little Princess she is all day long!! If you need directions or more information, please email me at wallacefamily@vabb.com or call my cell phone 540-661-7554 or call Stacey at 540-854-6938. Thank you for your support!!

February 4, 2009
Martha called me late so here are the results....She said Brooke's liver functions are looking GREAT!!!! Last week when they dropped her Prograf medicine from 1.2 to 1.0 because her level was 12 and that change in dose cut it in half which was too much. Martha said her little body is so sensitive to the Prograf so they are going to increase from 1.0 to 1.1 and see what that does on Monday when we go back for labs! I was so excited to hear her labs are GREAT!!!
Not forgotten....still waiting on results from labs! I have left a message yesterday and today!
I have been planning Miss Brooke's 1st Birthday party! I can not believe she is going to be 1 in 23 days! UNBELIEVABLE!! What a year it has been, but how much God has blessed our family and how much she has blessed our family and friends! She truly is a miracle baby!

February 3, 2009
I went ahead and took Brooke yesterday to DC to get labs because I did not know what the weather was going to be like the next couple of days. So I should hear something back today to let me know how they are. I saw her translpant coordinator and she was very impressed on how Brooke looked and how much weight she is gaining. We actually go back next Monday for labs and a doctor appointment. It will be exciting to see how much she has gained! She seems to be doing really well! Walking through the hospital yesterday she was smiling and talking to everyone....they all had to stop to talk to her and make over her and her cheeks!!! I will post as soon as I know what her lab results are.

January 29, 2009
Brooke's labs are in and all of her liver functions are good! YEAH!! Her prograf was elevated, this is her anti-rejection med so she is going to go from 1.2ml three times a day to 1.0ml three times a day. They are also decreasing her Prenisolone from 3ml to 2ml. So she is coming along good. They do want to see her back next week for repeat labs since there were two changes in her medications. So if this little snow storm they are talking about next week cooperates with us we will be in DC next Wednesday. Thanks for your prayers!
1:21pm...still waiting on Martha to call! Insurance company approved Brooke's medication through the 31st of January! So I am still fighting with them! CVS in DC was great, I do not have to file a claim to get reimbursed. They took the refill and minus the 5 day supply they already gave me and credited Brooke's trust fund for the remainder balance! So that was awesome! So now if we can just get it straight by next month's refill!
OK....well I didn't exactly win with the insurance but that is because CVS in DC was very helpful and went over and beyond! They were willing to mix her Prograf for only a 5 day supply so we had something to get us through until this crazy insurance company does what they are suppose to do and that is supply my daughter with her medication! Well we had to of course pay for this 5 day supply of medication. Let me give you a little idea of what her medication is costing....a 5 day supply of Prograf for Brooke cost us $258.96! CRAZY!!!! But she has to have it so thank GOD and all of you because without her trust fund we would have not been able to get her medication! So thank you!
She had labs drawn yesterday and I will let you know as soon as Martha calls me with the results. She seems to be doing really good. She is saying so many words with her recent being itty cat! She is still only crawling backwards though! . Prayers her labs come back good!
Update on Bo, his hand is ok, he received 15 stitches. He was in some pain throughout the night but I think he is going to be just fine. Thanks Dr. Dash!

January 27, 2009
What a day! I have been fighting with my insurance company all day to get Brooke's Prograf (anti-rejection medication)! I called last week and ordered it. CVS is DC usually automatically ships to me. I got some of her meds but not all. So I called on Friday and asked where it was. They stated that my insurance company will not approve CVS to supply me anti-rejections meds anymore....noone bothered to call me! So I called my insurance company and they said I have to go through a specialty pharmacy. Well the specialty pharmacy then tells me they can not get Prograf in liquid format. So I am stuck with nothing! I have been on the phone with my insurance company yesterday and today trying to get them to override this ASAP! I am on the phone as we speak! If and when they override it I will have to go to DC tonight and pick up because she has 0 left for tonights 10pm dose! CRAZY!! I ordered back on Tuesday of last week and here it is Tuesday a week later and I have none left and they are taking their time! This is important and she HAS to have this medication! Insurance companies SUCK! TOO much control in their hands! As many of you know I work with insurance companies on a daily basis and when it comes to my daughter, her medication that saves her life they do not know who they are messing with!!!! URGHHHH I am so upset this is so frustrating!
I also get a call from Bo, he has cut his hand really bad on a piece of glass at work! So now he needs stitches. Thank goodness my doctors that I work for is going to stitch him up so we do not have to go to the ER on a day like today! My work is AWESOME!
So I am going to stay on the phone with this insurance company ALL day if I have too until they get this straight! This is RIDICULOUS! But, I guarantee you I will win, they will override this and let us get it at CVS in DC or they can pay an ER visit at Georgetown! I will let you know what happens!

Pictures...(more to come...down for a nap now!)
Broooke and I have decided it is too cold outside and we are ready for summer time to come!
She liked the tag better!
Check out those teeth at the bottom with that smile!
She thought I was funny taking pictures!
Can we just go to the pool/beach now, Mommy?!?
My Little Miss Lady Bug!
My friend from work got this outfit for Brooke before she was born, I could not wait for her to be able to wear it! It is going to be just perfect this summer! Thanks Deb!

January 21, 2009
Brooke's transplant coordinator called yesterday and said that Brooke's Cellcept level is not registering and has to be increased to 3x a day along with her Prograf. These are both antirejection medications. We all know that Brooke's body needs these! We have been out of the hospital for 4 weeks now and I am looking to keep it that way! So please pray that when we go back next Wednesday her labs continue to look good!
Other then this, medically, things are looking really good!
Brooke is hitting SO many milestones! She is saying so many words which include Du..tin, De..in, nite nite, gi gi (my sister and dad!...too funny)! She also is pulling herself up in the crib and crawling backwards! She knows how to tell people no! I was holding her after getting off work, and my mom tried to take her, Brooke opened her mouth really big and shook her head no and laughed! It was so sweet! (for me anyway! )
I am off today and no appointments...how wonderful! Brooke and I are hanging out watching Barney! I am going to try to play catch up on some pictures and thank yous! I have NOT forgot about the outpouring of support and love just been busy with Brooke and her appointments, holidays, trying to work when I can and really adjusting to it ALL! But know I appreciate each and everyone of you and appreciate ALL the love and support! We couldn't and can not do it without each and everyone of you!
Thank you!

My first BOO BOO

January 15, 2009

Labs are in and...................

WONDERFUL NEWS........
Martha, transplant coordinator, says......Brooke's labs are really good! There are no changes in her medications and......we do not have to repeat for two weeks!!!! YEAH!!
Thank the Lord for blessing us once again! Thanks for all your prayers!
My prayers that 2009 is going to be better than 2008 are looking good!
I will say, Brooke got her first "real" boo boo today. She was sitting on the kitchen table at my mom's while we were playing cards and I was sliding her to my mom and her shoe drug on the table and she fell forward and her tooth went through her top lip and she now has a very fat lip with a bruise! It scared me so bad blood was on her and me! All she has been through and I get all shook up on her first busted lip! Oh boy this is going to be a fun 18 years!

January 14, 2009
So it is 5:30 and we just got home from our DC trip for labs! Wow how people fight that traffic on a daily basis is beyond me! I just pray I do not have to go up there any next week! It is going to be a nightmare on Monday, Tuesday, Wednesday and probably Thursday!
So as soon as I get those results in sometime tomorrow afternoon I will update and let you guys know how they are looking.
I had Brooke sitting beside me as I am typing and looked over and she is gone! She has scooted backwards all the way into the Diningroom under the table and laughing up a storm!

January 13, 2009
Nothing new as of today we just go tomorrow for labs so please keep us in your prayers as we take that long ride up to DC.
Brooke is patty caking now and getting up her knees goes backwards but it is a start. Really good for her since she really has not had tummy time much because of her surgery and incision! She has 8 teeth now! Four at the top and four at the bottom! She is hitting a lot of milestones and I am loving every minute of it! I can not believe she will be 1 next month! AMAZING!!
I will be sure to post as soon as I hear back about the labs probably will be Thursday though.

January 10, 2009
Brooke's labs are in and her Prograf has started to go up!! It is 7.2 they are decreasing her Prednisolone. Other than that no changes. We go back on Wednesday for repeat labs.
She is so happy and doing so well! We actually were able to go to Dustin's basketball game last night as a family! It was SO nice!

Januray 9, 2009
We had our labs yesterday and of course no problems. Lorna is just the best and she just loves Brooke. When she makes the initial stick Brooke will fuss and look up at me and then Lorna says...Brooke Brooke Brooke and she calms down and babbles to her.
We should know this evening the results so as soon as I know I will post.

January 8, 2009
We go today for repeat labs....We will not get the results until tomorrow afternoon sometime but please pray that her Prograf is improving! Also, her transplant coordinator called yesterday and she wants me to come by the clinic before labs to pick up new lab sheets. They are adding some liver function tests to it. So I pray all is ok and she is doing fine. She is acting fine, playing, eating so good! She loves table food and always has her little mouth open ready for you to put whatever you are eating in! She is saying mumma, da da, na na, pawpaw, bye bye!
I want to share a very cute moment. She is learning to point her finger. Mainly because we sing, This Little Light of Mine, but also she points to whatever she wants. I was holding her on the couch and she reached over and knocked a candle off the table, I said ahhhhh, she quickly pointed to Chelsie! It was so cute, she was saying not me it was her! It was the sweetest! Chelsie laughed and said Brookie you learned already!
OK, I go for now, just keep Brooke in your prayers today....Good Labs, Good Labs, Good Labs!!

January 6, 2009
8:00pm...Around 6:00 tonight Martha called to say Brooke's liver function tests were in Dr. Kaufman's words..."pretty". Her prograf level was still the same even after getting it 3x a day so they want to increase from .8 3x a day to 1.2 3x day and repeat labs on Thursday. They are not sure why her body is not absorbing the Prograf. They asked if she still had diarrhea but that is not the case then they asked if she was eating. Now that I switched her back to Similac Advance she is taking almost 32 ounces a day so I am not sure and they are not either why it is not going up. So until Thursday I guess we wait and see how she does. Thanks for checking in and your prayers!
2:00pm....Still waiting on results....
We went to DC yesterday and had labs we had to go between 1:00 and 1:30 because she is now on Prograf 3 times a day so the trough is closer to the 2:00pm dose she gets.
With that being the case we will not get the results until sometime today. Please pray that we get good news and her Prograf level is up and not still in the 6 range! Also pray her liver numbers are stable!
I have to learn and stop stressing everytime she gets labs. It is so hard because that really tells the tale if we are able to continue our normal family life at home or pack and head back to our home away from home. I pray each day that we can have good labs and Brooke will continue to get better each and everyday.
When I hear back from Martha, transplant coordinator, I will post...pray for good news!

January 2, 2009

HAPPY NEW YEAR!!!
I hope everyone had a Merry Christmas and a Happy New Year!
My hopes and prayers this year to each of you is a year full of health, happiness and love! 2008 was a rollercoaster but I must say we made it through each day and we have God and people like you to thank! Georgetown has been great too! Your love and support kept us going and our spirits high! Thank you!
I pray 2009 is a little less exciting! These past couple of months have been so busy and so overwelming and I just would ike to see 2009 slow down and Brooke to have a healthier new year! Where I can be home more as a family with Chelsie and Dustin and Bo! Please continue to pray for Brooke and our family! He listens and answers, WE KNOW THAT!
We had labs this morning her prograf was low so they increased her dose and wanted to check again this morning before the weekend. Depending on those results, will decide when we have to go back to have them repeated and to receive her last infusion of cytogam. When I hear what her lab results are I will post.

December 30, 2008
1:14pm...I called the transplant coordinator and she said Brooke's liver function labs were all good. Her Prograf level was low, 6, they want it 13 so I am sure they will be calling later with an increase of her Prograf dose. She also said her platelets were elevated so I am not sure what that is about either. She did say her's bounces around all the time so this must be one of those times she is high?
My apologies for not updating before now, but I have been SO busy! First let me say Christmas was beautiful and was just perfect! I had all three of my babies and Bo and the rest of our extended family together for an awesome Christmas holiday!
We took Brooke to get labs and her appointment yesterday. Everything went well and Jill said that someone would call with lab results....still waiting on those, Brooke's transplant coordinator was out yesterday so I will call today. Otherwise, everything looked GREAT! Just what I wanted to hear!
She is now on 2 antirejection meds, Prograf and Cellcept. They are hoping the two together will stop these rejection episodes. She is off her blood pressure medication! She will be off her antibiotics on Saturday also. So come Sunday morning I am happy to report she will only be on 8 medications. Where she originally was on 13! WOOHOO!
Thank you everyone for being so supportive and praying for our family! We love each and everyone of you and know we couldn't and can't do it without all of your support! We are SO greatful and appreciative!
So I am at work today....let's see if I can get a day in today and then my goal is a whole week in next week! That is if Brooke cooperates! Prayers she does!
I will update when I hear about her labs today! Have a wonderful day!

December 24, 2008
5:52pm....God Is Good All the Time......Brooke is HOME!! Praise the Lord! My Christmas Wish came and I have God to thank! Thank you all for your prayers and love and support! This is going to be the best Christmas Ever!
Now I am going to go spend time with my babies and hubby!!
12:22pm....We are waiting still for the doctor to come in and let us know if oral antibiotics are going to work or not. She has 2 infections in her line and the line is blocked they are ordering meds to try to flush through to get it to open up. She had strep and staph in the line.
Prayers that all goes well. We love and thank each and everyone of you for your love prayers and support! We are so blessed to have to many people who love Brooke and our family! Merry Christmas and may the joy of Christmas be with you all!
As soon as we know more I will let you know, until then we go to God and pray His will be done!

December 23, 2008
3:57pm...The doctor is saying there is a staph infection and depending on which kind of infection it is will depend on what kind of antibiotics she will need to get. She has to be on the IV antibiotic atleast 24 hours no matter what so that puts us here til 12 tomorrow atleast. He wants to pull the PICC line because that is what is causing this infection! Problem is she needs an IV to administer antibiotics. So they are going to see if a NICU nurse can come in and put an IV in and if it is one that Dr. Kaufman is happy with that looks good he will pull the PICC line out. Sometimes once they pull the line out everything is perfectly fine and she can go home with oral antibiotics. Also depends on the streghth of the staph infection also. So we are still waiting and see what happens. I will update when I know more.
11:48am...My apologies for just now updating. I went home Friday to finish Christmas shopping for kids and came down with the virus that Brooke had. Let me tell you it kicked my butt! I left the laptop up here. I couldn't come up here with that virus and give it back to Brooke so that was awful not being able to see her!
Well we thought we were coming up here to pick Brooke up and bring her home well seems like that is not the case. We are waiting for Dr. Kaufman to come in but the resident said that her blood culture is showing sosmething growing again. They are going to contact infectious disease and see but the PICC line probably is going to come out and depending what is growing will decide what they do for antibiotics.
So as soon as I know more I will update.

December 19, 2008 cont.
7:07pm...Well all I really have to say is a very long long long day! WOOOO.....First let me start by saying they found the bug and she has tested negative with antibiotics since her positive culture yesterday morning. So I pray these antibiotics she is on works! What is SO frustrating is we came in for rejection, but she is still here because of two things that she caught while she was here. That means someone did not do something right for her to catch the rotovirus and this PICC line infection! URGHHH! I am so afraid of what else she is going to catch in here!
She had the NG tube put back in because of her diarrhea from the rotovirus. So that is dripping slowly so her "gut" can tolerate it easier. Once her poop is soft and not water they will stop the TPN, which I hate she is on, it really messes up the liver! Then once she tolerates her NG feeds good they will pull that again and start bottle.
When they placed the NG tube they ordered an x-ray for placement. I had a NICU nurse who was just perfect today and I knew she knew when she had placement and when we did them we did not have an x-ray to see placement so I refused. The radiation seemed more dangerous then the chance we did not have in. So I refused and they said fine and everything is ok.
She was also on Bactrim on Monday, Wednesday, and Friday. Well the nurse came in with another med and I asked as I always do what it was and I did not recognize it and she said didn't they tell you...this is to replace the Bactrim for the month because her body probably is not absorbing it very good. I said noone told me.
So I asked to have the doctor come in and go step by step everything that was going on and the plan and my opinions. I do not want the PICC line, I do not want the TPN and I never did and now look what we have going on because of it. So he listened and explained he wish he had a crystal ball but didn't and we just have to wait. Well, my comment was.... we will give a couple of days if her poop is soft the TPN is coming out and if we can have oral antibiotics the PICC is coming out and I think I will NEVER have them put another in again!!!
So he said lets see how she does tonight on her feeds and see what her poop looks like and go from there. I asked about coming home before Christmas and he said he was pushing that and hopefully that would be the case. The lady with him did say she understood my frustration and apologized for not informing me about the med change.
With that said the other team doctor came in and said later on we are giving her mag her level was a little low. Thank you that is all I ask just keep me informed and let me in on the decisions. I am Brooke's advocate and if you would have listened to me before we would not be here right now! So I will definetly be more vocal on my opinions and voice my concerns and fight for what I feel, until they can prove otherwise!
OK now I have to go fight traffic home and finish all the Christmas shopping and things. Bo is up here tonight so I am not sure when I will be able to update probably not until tomorrow night. Please just continue to pray for Brooke and this WHOLE situation.

True Meaning of Christmas...wanted to share

You are cordially invited to
A BIRTHDAY CELEBRATION!!!
Guest of Honor: Jesus Christ
Date: Every day. Traditionally, December 25but He's always around, so the date is flexible...
Time: Whenever you're ready.(Please don't be late, though, or you'll miss out on all the fun!)
Place: In your heart.... He'll meet you there. (You'll hear Him knock.)

Attire: Come as you are... grubbies are okay.He'll be washing our clothes anyway. He said something aboutnew white robes and crowns for everyone who stays till the last.
Tickets: Admission is free. He's already paid for everyone... (He says you wouldn't have been able to afford it anyway...it cost Him everything He had. But you do need to accept the ticket!!
Refreshments: New wine, bread, and a far-out drink He calls "Living Water,"followed by a supper that promises to be out of this world!
Gift Suggestions: ; Your life. He's one of thosepeople who already has everything else.(He's very generous in return though. Just wait until you see what He has for you!)
Entertainment: Joy, Peace, Truth, Light, Life, Love, Real Happiness,Communion with God, Forgiveness, Miracles, Healing, Power,Eternity in Paradise, Contentment, and much more! (All "G" rated, so bring your family and friends.)

R.S.V.P. Very Important!He must know ahead so He canreserve a spot for you at the table.Also, He's keeping a list of His friends for future reference. He calls it the "Lamb's Book of Life."
Party being given by His Kids (that's us!!)!Hope to see you there! For those of you whom I willsee at the party, share this with someone today!

December 19, 2008
10:00am...We are still waiting on the culture to come back to show what kind of bug is growing so we know exactly what antibiotic is going to work. They are still giving her many antibiotics throughout the day and night to see if any are helping.
Dr. Kaufman came in last night around midnight. He said they were still waiting on the culture and they would go from there. I asked what the plan of action was and he said depending on he,r they need to treat with antibiotics, see hoe her formula agress with her, may need to go to NG tube, I asked about the PICC line and he said it may come out or may not depends on if they need it to treat her.
So her stools are still loose and and some liquid so I am not sure why if it is the infection causing it, the rotovirus still, or what.
The resident came in early this morning and said they are still waiting and that she looked good. I asked was there a chance we would be able to be home for Christmas and she said that is what they are working towards. She doesn't see why we could not go home even if she is on IV antibiotics. They could just have a home health nurse come. There is a chance that whatever is growing can be treated with oral antibiotics too.
So again we wait and see when Dr. Kaufman comes in and see if the growth has come back from the lab. I do hear him out there, can not believe he is here already after being here so late last night! He is one amazing man. I am going to start calling him the Energizer Bunny!
OK I will be back as soon as I know more, thank you for your prayers!

December 18, 2008
7:20pm...So we are still waiting on news, makes for a very long day! She is taking formula and as long as that works and her poop goes from liquid to soft she will not go to tube feeds. We have not gotten news on her culture and what is growing and the plan of care. So I continue to wait!
12:51pm...still waiting on doctor but wanted to share this picture. Brooke is learning how to throw kisses. She gets her hand there.....and then laughs, she will not throw the kiss, it is precious!

7:04am...I just had my daily devotion with God! I would like to share....I wish I would have had this one yesterday and maybe I would see things differently and maybe would not have gotten upset and would have stayed focused! Honestly, I was so worried with Brooke and her going backwards and not progressing forward I skipped my time with God and my devotional. I wonder if this would had been the one if I would had stayed focused on God.
I know this has been a difficult journey. We have had our ups and downs. The emotional rollercoaster has been one of the wildest ones with so many flips and turns and drops, but I can not forget the climbs too!
It is important to always stay strong and focused on God and know he is in control and that.....here is the quote from my devotional...."God is not committed to our comfort, but he is committed to our character, to making us more like Jesus, and he will use every part of our life to make it happen. God does not waste a single experience and there are no “scraps” of life to be thrown away!"
I have to know that these trials, these hiccups of life are all for a reason and all part of His plan! I have to trust in Him that he knows best and will take care of All things!
My devotional said..."People are like tea bags. If you want to know what is really inside, just drop them into hot water! How we respond to mistakes, problems and sin tests the strength and reality of our faith. James writes, “Whenever trouble comes your way, let it be an opportunity for joy. For when your faith is tested, your endurance has a chance to grow.” James 1:2-3 (NLT)
A Virginia woman, on John and Kate plus 8, really opened my eyes last night. She was at St. Judes in Tennessee with her child who had cancer, and she said something like this....I am lucky, I now have something most people don't have, I have a closer relationship with God because of all of this! This is my want! To look and take life opportunities and let it be an opportunity of joy and grow closer to God!
So with that said, the doctor just came in and said that Brooke's blood culture grew some bacteria. It was good that they started the IV antibiotics and caught this early. As my last post stated, she responded to these antibiotics and hopefully they took care of the infection and will continue. She has not run a fever since. This afternoon they should know more about what bug is growing and know exactly what antibiotic she needs.
So depending on what bug and antibiotic she needs she could need IV meds for 1 to 2 weeks, maybe longer. Please pray that it is a small bug and the shorter is better. She started yesterday, Wednesday, so a week would be Christmas Eve.
My prayers today are to praise God first that these awesome doctors caught this quick responded quickly and treated quickly and that her body responded and I pray she continues to get better! I pray that the labs come back today with news that it is a small infection and can be treated fast and effectively!
They are not sure if the PICC line caused this, I thnk it did. I asked since this is a risk and possibly caused this infection will it come out...he said probably when she is discharged but right now they really need this line for fluids and antibiotics. So please pray about this situation also. That God's plan and will be done. Does she have to have it or do we try regular IV lines. Labs is not an isuue, Lorna in the lab, is AWESOME, one stick and there is the blood! So what is best for Brooke at this point?
Dr. Kaufman will be in later this morning and I am sure he will have more information and more to say and plan of action. He is a very smart man and I trust him totally with Brooke, I just like Jill to give me the information!
So we wait and see what is going on, I will post as soon as I know more. She is taking pedialyte and they are encouraging me to do so as much as she wants.
Thanks for your prayers and please continue to pray for her and this situation!

December 17, 2008
10:20pm...Brooke is a totally different baby! The doctors came in and said wow this is not the same Brooke from this am. Now they are not sure if the antibiotics are helping, the TPN nutrients, virus leaving or what. So they are going to wait until tomorrow and see what happens. They still say she may need to have the NG tube but that is better than this TPN and is only temporary until her tummy is strong again and can handle the milk.
She is talking up a storm! Praise God! Thanks for the prayers!
5:36pm...So brooke is still NPO and they are going to give her TPN which is basically nurishment through her PICC line. I was not happy and got upset and the nurse practitioner, JILL, who I might add is AWESOME, came in and explained why they decided and I explained why I was so upset and she made everything seem ok. I wish they would explain things a whole lot better in our terms before just saying this is how it is going to be and there!
I explained to her I was upset with the PICC line, upset we were going home with the PICC line, upset she was switched from Similac back to Elecare, upset now they were doing this TPN, upset we were suppose to go home and are still here, frustrated about 2 bouts of rejection in a month, frustration about this horrible virus....I thought once she was transplanted my hard times would be behind me....boy was I wrong.
She sat down with me and explained that the TPN will only be for a few days and this is nurishment and will actually help her get better quicker. She will be able to bounce back a whole lot faster with than without. Jill said that if Brooke did not have the PICC line she would agree with me and say ok maybe let us rethink this. She has this line and if it is going to help her get over this virus faster then that is what is best for Brooke. I understood a lot better with her sitting down actually listening to me and then giving her opinion. I truly feel she is on my side and is looking out for the best interest of Brooke....not that the other team is not she just explains and shows why they are doing what they are doing and cares about my feelings and I need someone like that.
So we should know more in a few days, the labs will be back she will have this nurishment for a few days and hopefully some answers but more importantly I pray I have my baby girl feeling better and back to her normal self! She is so sweet and just goes with the flow and really just hanging in there like a real trooper! She is amazing!
Prayers please! She is in His hands and that is the best place for her!
Remember this quote I just loved...

Ok I still do love it but I am really going to get sick if I keep staying out here in the rain dancing!!
12:00....Brooke is not having a good day. She is running a fever, very lethargic and not herselt. The doctor came in and is ordering lots of labs, blood culture and blood gas and a couple of more transplant labs. I am not sure what is going on and he doesn't either. He was impressed with her hydration and heart rate not being too high. I am very worried. I do not know what is going on. Please keep Brooke in your prayers! This is the first time she has ever ran a fever! PRAYERS PRAYERS PRAYERS. She is in God's hands he will take care of her I know it we just have to put all our faith and trust in Him. He is good all the time and this I am praying is just a little hiccup!
9:50am.....Brooke can not catch a break. She was doing so good. The doctor came in late around 11ish and said well she is not taking formula go ahead and give pedialyte. She was drinking that, her poop is normal again no more diarrhea. 4:00am she took another 4 ounces.
She has not eaten anything since. She is moaning and gagging like she is getting sick all over again! I do not know what is wrong why she is flipping back and forth and sick all over again. One of the nurses came in and asked was she teething? Not sure. So she was going to let the doctors know.
PRAYERS she will get over this and be able to come home soon!

Special Thank You!
I just received a phone call from a very special young lady, whom I just love! She is such an amazing person! Shelbylee Tolley!
She has been working on projects and presentations at Orange County High School to benefit Brooke and our family!
She told me that today the class pulled together and are making posters, banners, putting piggy banks at their jobs, going places to get support and we are truly greatful!
I want to say a very special thank you to Shelby, your teacher and the students at Orange County High! You are an amazing group of people and my family thanks you from the bottom of our hearts!
Brooke will live a long healthy life and each and everyone of you will have had a part in that! Thank you for caring so much and your support.

December 16, 2008
9:51pm...So they stopped pedialyte and said to try only formula (Elecare), she HATES it! I knew she would, when they stopped it and gave it sweet pedialyte that was going to happen! They are hoping the Elecare is easier on her stomach and the diarrhea will go away. Hmmmm I hope so, if not, feeding tube will have to go back in.
I am to the point where I just want her well and home! So whatever it takes for Brooke to feel better and get off this detour she took and get back on the road I will take and do. Feeding tube is only temporary, PICC line is only temporary, Elecare is only temporary, none of these things are permanent!
God knows best and everything is in His hands! He is in control and he sees further down this road then I can see. I have to trust Him and put all my faith that he is handling things!
Thanks for your prayers and please pray God's will be done if that is a feeding tube so be it!
6:18pm....I am so frustrated.....Brooke can not kick this bad case of diarrhea! They had stopped all feeds until today and then started she wouldn't take anything! Finally at 2:30 she took pedialyte and has taken 13 1/2 ounces since then. She ate some banana and crackers with cheese. So I hope she is on the rebound!
I am not sure why she is keeping this so long or what is causing it. All tests are negative and her liver numbers are all coming down! Praise God!
So we are just hanging out, I am waiting for the doctor to come in and answer some of my questions. So I will update once I talk to him. Prayers for Miss Brooke and this bout of diarrhea!

December 15, 2008
9:50am....Just spoke to Bo, he is with her today, and he said Brooke is throwing up and still has diarrhea. They have stopped her formula and only taking pedialyte. I pray this passes and soon she will be better!
Waiting for the doctor to come in.

December 14, 2008
6:37pm....Brooke now has a rash on her stomach and neck not sure what it is or what caused it. They gave her benadryl and it has lightened up. She was laying on my chest for a few hours so maybe she is allergic to something I have on?
She is eating and she woke up a little while ago and actually played in her crib and talked awhile. I can tell she is feeling a little better. She also has slowed down on her pooping! Woow thank goodness....she was going so much so fast she was going through the diaper and blankets....our linen bag is FULL!!
The diaper was weighing 260 grams on scale and now it is down to 78, 67, etc! So I pray she is getting over whatever this is too!
Thanks for your prayers!
1:01...Brooke's labs are coming down beautifully! However, she is putting out more than she is taking in and she is a bit dry. The doctor came in and said she needs to keep her to watch that until it goes away. Please pray whatever is going on will go away and she will have some normal stools again!
The steroids may also be causing the loose stools because it is causing her to eat more. She seems to gag everytime she pushes to poop. Not sure why she is pushing to poop because it is nothing but loose! She did gag enough around noon to throw up which was not good!
So her rejection is being taken care of and looks great but her virus or whatever she has going on is not good!
Otherwise, things are quiet here! Well when Brooke is not fussing which she has been doing alot today! I have nicknamed her to the nurses OSCAR THE GROUCH! She has not smiled in a few days and is not feeling well. Not my little Brooke!
So please pray she gets over this bug and back to herself really soon!

December 13, 2008
6:16pm...Brooke has not thrown up anymore! She took 32 ounces of pedialyte by 11am and anothe 4 at 1:30. So the doctor came in and said we should try formula again. So at 3:15 she took 2 ounces antoher 2 at 3:45 and againat 6:00. Also this is not the HIGH dollar nasty formula it is regular Similac! So looks like we can give her anything she wants including regular formula now! Thank the Lord!
They have hooked her back up to the IV for fluids because her labs this am showed she was a little "dry" (dehyrdated?) so they put her on that for awhile. I think because she is pooping so much that more is coming out then in.
Doctor still saying maybe Wednesday to come home. Prayers please! Also, please pray she remains home this time!! OUTPATIENT OUTPATIENT OUTPATIENT is all I want to see these people. They are EXCELLENT don't get me wrong but I would like to see them on outpatient status only!
They are going to keep the PICC line in for a few months. They say it is unfair to keep sticking her so much. I have to agree I just worry so much on the infection part of it! They are going to teach me how to change the dressing and flush it. If I can handle putting in the NG tube I can handle a little flush and dressing change right?!?! I swear I should change my profession and go into nursing!
Well that is all for now. Brooke is sleeping again, and I am watching the 25 days of Christmas! Good Night Sleep Tight!
Again, please keep Eme and her family in your prayers they so need them right now!
9:17....Brooke is on pedialyte and tolerates that well. She took 8 ounces at 8:30am. She is sleeping in my arms right now her labs are coming down still this am they are...
Labs
12/13
Normal
AST
46
10-37
ALT
157
7-35
Alkaline Phos
255
39-117
Bili-total
0.7
0.1-1.0
Prayers these continue to lower.
I know a lot of you ask and check on Eme all the time, please keep her and her family in your prayers. She has not updated her website but has updated the support group I joined. She has taken a turn for the worse and really could use some prayers! Please hold Eme and Erika close right now! This little angel has been through so much.....prayers please!
http://www.cotaforemersonw.com/node/46

December 12, 2008
11:40pm....She took 2 ounces of formula and then threw up. I thought she might have stopped. Her weight is down, I hope she starts eating soon!
9:23pm...Ok here are her liver numbers so you have an idea what they should be, what they are, and where they were. I did forget to mention, the steroids she is getting causes her glucose to be elevated. Therefore, she is getting insulin shots when needed.
Lab
12/9
12/10
12/11
12/12
Normal
AST
225
?
96
66
10-37
ALT
361
?
274
209
7-35
Alkaline Phos
281
?
294
268
39-117
Total Bili
0.7
?
0.6
0.1
0.1-1.0
Glucose
75
241
181
80
70-105
So they are coming down, looks like we will be here atleast to Wednesday when the steroids are complete. Prayers it will be Wednesday and we can get back to the Wallace Norm!

8:16pm...Brooke had a really rough night last night and day today. Bo was up here with her so I could spend some time with Chelsie and Dustin. He said she was throwing up last night and all today. They stopped her formula feeds and kept her on pedialyte but she continued to throw up so they stopped all feeds for three hours and he attempted the pedialyte again. She has not thrown up since noon. She does have a lot of diarrhea again and they are concerned how much she is pooping. They sent her poop off to be cultured and they are trying to get a urine culture but the bag either comes loose or they tried putting a cotton ball in the diaper to get in and she pooped all over that.........
The steroids are working and her liver numbers are coming down.....They are going to bring me a print out of the labs from this am in just a little while so I will compare to yesterdays and give a report to you.
Otherwise, all looks well. The doctor told Bo the PICC line was not going to be pulled when we are discharged. I will discuss this with her tomorrow if she is here or Dr. Kauffman. I am not liking this idea. Infection can sit in and we do not need any other situations than what we already have to deal with! So please pray, as I will be also, the best decision will be made concerning this.
She seems in good spirits and very happy. Bo said she has not been like that at all so maybe she is turning around. We pray she is!

December 11, 2008
Brooke and Jessica's story is on You Tube, so I uploaded on the videos here. If you haven't watched it yet, please do so! She did a really good job putting our story together! Thanks for your continued prayers and support!!
I am getting ready to head out and go see Chelsie and Dustin. Looking forward to seeing them but not that drive back home! Prayers for a safe trip, especially with the nasty roads!
4:03pm...she is back up here, very droggy but drank 4 ounces of pedialyte and is working on bottle two! Her arm looks pittiful with lots of sticks from them attempting to get access. She is really fussy and in some pain. They gave her some tylenol and you can see why she needed it!
3:27pm...The nurse came in, SUCCESS!! YEAH!! So they will wait for her to wake up and then bring her back up here!
3:13....Still waiting, the nurse has been in twice to assure us Brooke is OK they are just having a really hard time getting access! We knew that was going to be the case...I pray they are able to get this line soon and she will be back up here with me! The good thing is she us under seadation and can not feel any of this!
1:45 suppose to take 15 minutes almost been an hour....they can't find a good vein. This is why she is getting PICC but they can't find a good one to put line in.....PRAYERS!
1:12....She is in radiology and they are placing her PICC line as we speak! Prayers....The nurse was so AWESOME all three of them! I even have a picture, the nurse gave Brooke her OR hat! Hope you enjoy it as much as we did! She is so precious!
8:32am......Brooke is sleeping comfortably, I wish I could nice day to curl up with a big comforter and pillow and sleep!
The doctor came in and said they are going to add Brooke to the schedule to have a PICC line put in. She still has her IV but if she loses it, it is going to be last night all over again. They also came in at 4:30 to get labs that was bad too. The doctor even tried to no success. They ended up doing a heel stick and getting blood that way. So with the PICC line they will be able to give meds and draw labs. I am ok with this, prayed about it and as long as it comes out before we leave I will go for it. I just worry with the infection factor. But a week with it I think I can handle. She won't have to be stuck so much! Labs will be nice at 4:30, we may be able to sleep through them...hahaha
Looks like Picc line will go in around noon. Prayers please, sedated again.
She is sitting up playing in her crib wanting her puffs, but all she can have is pedialyte. Here are some pictures....

December 10, 2008 continued.....
11:40...wow, NICU came up and tried to get an IV started, not sure how many times they stuck her and it would blow everytime. So they left...no IV. Cris from PICU came over again, who I must say is awesome, and got the IV in her head right away! They bandaged her head up really tight and put a "no no" on her arm! They put a pretty Care Bear sticker on her bandage to dress it up! They are so sweet up here and really have a lot of patience with Brooke and her IV's! They truly care and make my day a whole lot easier! Could you imagine the day I had today with my meltdown and then have bad nurses on top of that? I would be in Snowden for sure! But these nurses up here, everytime we come are sweet, compassionate, caring, loving and just perfect with Brooke! I couldn't ask for a better group of people to help her!
The resident came in after they got access and said that the doctor in the morning will probably talk about still putting in a PICC line because of the steroids she has to be on for a week. I am not liking that but I am not liking her losing these IV's and be stuck all the time either....so I will pray about this and see what happens!
OK, it is really late and I am going to try to get some sleep before they come in....actually they come in at 12 for vitals and again at 4 and labs at 4:30.....ok I mite get a little bit of shut eye.....Maybe.
Good night, sleep tight!
9:43...that was the quickest IV she has ever had. It went in ,10 minutes later Brooke pulled it out! It was in her head and the piece was bothering her so she pulled it out. That little pistol, as her grandma calls her! So we wait for another stick!.......oh my what am I going to do with her!
8:22pm....She is weighing 15 pounds 2 ounces! Finally over the 14 pound mark! WooHoo Brooke!
So they are going to treat her with steroids and another med....no picc line and no long stay...thank the Lord!!
Thanks for your prayers!
With that being said.....she lost her IV....so someone from NICU is going to come and try to start a new one! Right now it is change of shift. When they took the IV out her hand was all swollen and she was getting mad because she wanted to suck those figers but I guess it felt weird or nasty!
She is eating good, a little fussier today. So I will let you know how the new IV works.....another stick!

Santa, Frosty, Mrs. Clause and Rudolph....
came and visited I couldn't get a picture of them because they had to stand at the door and I forgot my camera!! My phone was charging but I was able to get these afterwards.....She just looked at them all....not scared or happy then looked at me like who are they!

Merry Christmas! Here are my little angels!

December 10, 2008
Ok so my updates are gone...thank goodness I saw the site messing up and I copied and pasted the updates in a word document! Urgghhh, what else! I will put them back on later but here is how my day is going.....not a good one!
I need to vent….I am going on no sleep, emotions are high, and I need to let some of this out and shed some tears…..
First, I KNOW life is not fair and is not fair for a reason, but I have to say I have had my share! Can we just catch a break? Poor Brooke has been through SO much already and our family has been through so much and I just want to be at home! I hate the fact that she has to get stuck so much, we have to travel up here all the time, our family is separated more than together, I have to worry if Brooke is going to live a normal life, I miss my other two SO much and I can’t keep them out of school and they need their mommy as much as Brooke needs me and as much as I need them. I hate not being able to kiss them goodnight , hug them and ask them how their day was! I hate not being able to sleep in my bed, this pull out couch SUCKS! I want to go to work and see my friends there and earn a decent paycheck! I want to scoot my chair to the side and enjoy laughs with my buddy, MeMe. I want to enjoy the Christmas festivities and enjoy Brooke looking at the Christmas tree in awe and pulling my bulbs off for them to fall and crash to the floor! I just want a break!
The doctor came in to tell me that Brooke is rejecting and will need to be on a week dose of steroids. She is also going to talk to Dr. Matsumoto, the surgeon, and see if he wants to try something stronger since this is the second time she has rejected in the past month. If that is the case we will be here much longer and she will have to have a PICC line placed. See what I mean, can we just catch a break! This is so frustrating! I pray, God please I know I am probably being selfish but please please please let it be just steroids for a week and we don’t have get the PICC line and do not have to be here a very very long time because I am going to go crazy!! I am trying to be strong, I am trying to put ALL my faith and trust in you, I am trying to be a good mom and advocate for her but I really don’t know how much I can give! Please God give me the strength and courage to handle these trials that are being thrown at me, help me to understand and accept these trials and learn from each and everyone of them. I pray Lord that I will keep you first and pray ALL decisions are made after coming to you in prayer and that your will be done in this situation. It is SO hard right now, I feel like I am giving and giving and we are still falling short. I don’t understand what is going on and why this is going on and why we can’t catch a break but I am putting all my emotions, fears, worries and frustrations in your hands. I am praying for strength, courage and I pray for you to put your arms around me and hold me tight because you are in control and I need to know that and feel that! Amen.
Again, I am sorry I am just needing to vent some and I know you guys are there for me and are listening. Please pray for Brooke and my family. This is a very difficult time in our lives and I know we will make it, we just need prayers. I have learned you do not take things for granted and you need to cherish and hold each and every moment you have each and every day close to your heart. The little things, hugs from your kids, kisses on the cheek, conversations in the car with your kids, dinner together at the table, game night with the family, homework together on the couch all need to be cherished and appreciated and not taken for granted. If I could be home holding all three of my beautiful children in my arms right now, I would be the happiest woman in the world…..take the time to tell them you love them and hold them tight! I love you Chels, Dustin and Baby Brooke, you are the apple of my eye and mommy loves you all more than words can say. One day soon we will catch a break and be a family at home together enjoying all the fun things we do together. I love you and miss you terribly!!
I will keep you all up to date on what the doctor decides to do, meantime, please pray to the one who is in control of All things, God is good and he is here with me I just have to give Him my All! I love you all and appreciate your faithfulness to our family and keeping in touch!

Loved this quote!

December 9, 2008 continued....
9:33pm...spoke to the nurse and asked some questions, she said with them just ordering 4 rounds of steroids it is probably a very mild case of rejection and not to worry. They will check labs in am and go from there. I can hopefully sleep a little better with that information. Please keep the prayers coming, and include me in them....yes Brooke needs them the most but I tell you I could use some too. This is a very stressful time and I thought if I could get through the transplant it would be smooth sailing and I could handle anything!! Boy was I wrong. I think post transplant is worse! I will just put my faith and trust in God's hands and know he is in control! It is just frustrating trying to get back to normal, but I guess this is part of our normal. I hate the fact that I do not have a schedule, these curve balls are realing playing a number on my game plan! But...she is here with me, in good hands here at Georgetown, I have wonderful family and friends behind me, and God by my side, I CAN do this!! Prayers Please, we SO need them!
8:04pm....The resident just came in and gave us the bad news....it is rejection. So they will treat her with steroids and go from there. He didn't have too much information, said we need to talk to Dr. Reckman in the morning. So I will have more news tomorrow. Very frustrating, why come in and give us news like that and not have any answers! So I am sure it is the same plan as before steroids and watch to see if her numbers come down. They did say they caught it early and as she moves further from her transplant date the less likely she will reject. Her prograf has been all over the charts so I am sure that probably had something to do with it also. Maybe being sick too, like I said no answers for me so I hope to get more from Dr. Reckman tomorrow.
Brooke had her liver biopsy and did really well. Her labs from this morning are the same and they are thinking this is from a virus. She received 3 vitamin K shots after the biopsy, as precautionary to prevent bleeding. She is sitting up eating Mc Donald's french fries and talking up a storm. She drank 7 1/2 ounces of pedialyte at 3pm and now took 4 ounces of milk just now. She is doing really well and I really am thinking it is viral.
She just goes with the flow and smiles and plays and laughs like nothing is wrong. She has no clue she is filling my head with gray hairs!! But that is ok I will take the gray hairs I am sure these are just the beginning of many more!
Thanks for your prayers and comments they do truly keep us going! Right now we just wait for results of biopsy and results of the stool culture.

Brooke makes headlines....
Medill Reports Washington.... A. Seraphina Lin, reporter, put together a beautiful story on Brooke, Jessica and our family! Please take the time to watch!.........This is what Christmas is all about! What a PERFECT FIRST CHRISTMAS!
http://news.medill.northwestern.edu/washington/news.aspx?id=109457
Special Bond this Christmas....

December 9, 2008
Two months since Brooke's transplant and we are inpatient having a biopsy as we speak! We went up for labs yesterday and infusion and her liver numbers were elevated so they admitted her. They are checking to see if it is rejection, infection or just a virus. She does have diarrhea so they sent that off to see what that shows. They put her under in the room and are doing it in there. I pray it is only a virus!
My nerves are shot! This is so unfair to live this way. Something as simple as a stomach virus or diarrhea is so crucial to her! I never thought something like that would interfere with her labs and cause us to be inpatient! What do you do? I can't live in a bubble, I get tired of saying wash your hands wash your hands! So please I ask do not get upset with me or think I am nagging wash wash wash but as you can see, if this is only a virus you are going to have to wash!
I will update with results of labs and biopsy will take a few days to get those back.
December 3, 2008
OK....so the pictures were AWFUL!! The lady was not very good, Bo was having a bad hair day, Chelsie and Dustin was not smiling, Brooke was in a very foul mood and me well to say the least I am exercising everyday maybe twice a day until our next appointment in 12 days! So we walked out without pictures and said we would make another appointment later!
We did get pictures with Santa and Brooke had no emotion. I got the picture though! I will post that picture later. I have to get Bo to bring it to me.
I made it a second day at work! Let's see if I can get my week in!
December 2, 2008
Brooke had labs done again yesterday and everything looked good. Her Prograf this time was low....so they increased her med from .07 to .08. Will they ever get this stable?!?!
I hope you all had a wonderful Thanksgiving holiday and that you took the time to really be thankful for the things in your life! Our Thanksgiving was beautiful! We had so much to be thankful for and we were surrounded and I mean surrounded by so many family and friends! I think there were 31 gathered around for some awesome thanksgiving food and fun!
We go tonight to get family pictures done and take a visit to see Santa Claus. I hope I can get Chelsie and Dustin to sit with him so I can get a picture of all three and I hope Brooke is not too scared! We will see how it goes, if all goes well I will post pictures in the morning!
Well nothing much really going on....thank the Lord! Just preparing for the Christmas Holiday and actually going to try to get my 4 day week of work in!! We will see how well Brooke cooperates.
November 27, 2008
Happy Thanksgiving!
Wow, doesn't Thanksgiving have a whole different meaning to me this year!
I have SO much to be thankful for this year! God has truly blessed and held my family tight in His arms these last couple of months! I am so thankful to have a personal relationship with my Saviour and see His work!
I also am so thankful to Jessica and her family! What she did for little Brooke is just amazing and I am greatful to her for this. Words can never express a mother's feelings for this heroic gesture that she did and how she put so much out there for us! Saving my baby's life what do you say? Thank you so much Jes! Thank you!
My family and friends! I am so blessed with so many family and friends that have pulled together and supported us and been there for us more ways than one! I can not ask for a better group of amazing, wonderful people!
My church family, both Bo and my work family, the community! You never know what you truly have until you go through something like this and truly see so many people who care and who are behind you and support you and do so many things for you to make things a little better when you are trying to struggle with a trial that you are going through. I can not thank you all enough for your outpouring of love and support. Without each of you, including my Saviour, his journey we are on would be so much harder. I can not tell you how less stressful you have helped make things! Meals, donations, support through the golf and softball tournament, help and care for Chelsie and Dustin, the phone calls, the signaures on here, the texts, the cards, the prayers and your love do not go unnoticed and have so helped us more than you can imagine! Thank you so much!
So yes this Thanksgiving I look at things in a different light! I truly am so blessed to have so many people who love and care for my family and have helped us through this journey we are on and that is a true blessing. This Thanksgiving is one that we will hold dear and close to our hearts and we have you ALL to thank!
**************************************************************************************
Now on to Brooke's appointment yesterday. She received her cytagam infusion yesterday. Chelsie and Dustin and I traveled up there together and had a nice couple of hours together with Brooke waiting for it to finish. We got up there around 8:30 and left around 2:30! Traffic was horrible! Plenty of memories were made and it was nice having that time with the kids! My arm is black and blue probably from Chelsie nailing me with all the punch buggies and their ears are probably sore from my singing along to the Christmas carols on the radio (Wash FM 97.1, they play christmas music all day long!) We had a lot of funny conversations and we made the best of a bad traffic day!
Her infusion went really well. They took blood when we first got there. Just to check her prograf levels. They were high on Monday....they doubled so we did not give the dose last night and not this morning. We will resume taking it tonight where her dose was 2.0ml to 0.7ml. I hope it doesn't drop too low! The doctor said she wish she could figure out what Brooke's body is trying to tell her but she is all over the chart with her levels....so we go back Monday for more labs and we will see what her body says this time.
Again, Happy Thanksgiving and please take a moment to look at life and truly be thankful for the many little things along with the big things and truly be thankful this year! God has given us a life that has so much and we need to appreciate and thank God for these things each and every day!!
November 25, 2008
We took Brooke to Georgetown for her appointment yesterday and she was suppose to get her Cytagam infusion. Her labs all looked good, except her Prograf(anti-rejection) levels...they were high again. The transplant coordinator said Brooke is very sensitive to the Prograf, so they are decreasing her a tiny bit and see what that does. As for the cytagam infusion they did not have any beds available for us to get it so we have to wait and possibly go up tomorrow just for that. I pray they can get us in early so we can get up and out before that horrible traffic kicks in! I am going to ask and see if we can do it through the night.
She did lose some weight, she is not eating as well now that the steroids are wearing off. So I really have to push the bottle as much as possible! But we tried the apple juice....5 ounces later she was happy! Just can't give her apple juice so we keep trying. If she is hungry she will eat the Elecare formula but if not those lips tighten up and nothing is going in.
Her blood pressure is down so they stopped one of her blood pressure meds....Down from 13 to 11....And one is only once a day another from 4 to two! WOOHOO!!!
I will let you know how tomorrows appointment goes....hopefully and I pray it will be the earliest they can get me in!
November 21, 2008
So much for getting that whole day of work in. Around noonish my mom calls to tell me that Brooke was running a fever and had hrew up. So as insructed I called her transplan tcoordinator who said for us to go straight to the ER.
We went to the ER and she was not running a fever and took 17 ounces of milk without throwing up. The ER doctor came in and said Dr. Kaufman had reserved a bed for Brooke. I said why do we need to be admitted she is not running a fever and she took 17 ounces of milk. He said he was going to go talk to Dr. Kaufman. Dr. Kaufman came down to look and examine Brooke. I made a deal.....can we go home and I come up here Thursday when Jessica has her appointment and we see how she is doing and go from there? He agreed and we came home. Yesterdays labs were all good her Prograf a little low so they increased that (Last week it was toxic) go figure?!?! They said that is how it is the first year though.
So we are home and go back to Georgetown Monday. Maybe if Brooke behaves I can work Tuesday and Wednesday nex week. It was nice to be at work and see all my friends there but I hated leaving her!
She isn't eating as well today, I think those steroids are wearing off now...hopefully she will pick up this afternoon.
Jessica is doing really well. Her appointment yesterdaywent really well and she should be returning to work on Monday.
Thanks for all your prayers for both Brooke and Jessica and please continue to keep them both in your prayers. I will let you know of any changes or updates.
November 18, 2008
Well......after 6 weeks, I have returned to work.....I am working two days this week, three next week and then back to my "normal" schedule the following. I am going to miss Brooke TERRIBLY!!! Today will be very hard but I know she is in great hands with my mom! It is nice to get back to somewhat my "normal" life....the girls and doctors here are great and I have missed them a lot! They have been VERY supportive and have touched my life and are such a blessing to me and my family!
Brooke had her labs yesterday and her 6 month well check....a little behind but none the less everything was good. We started at DC with her labs and was there by 7:00am. Out by 7:30 and at her pediatricians at 10:30. She is weighing in at 14 pounds 5 ounces so still gaining!! She only got one shot yesterday and that was the flu shot. Her six month shots will be in one month....we have to play catch up. Dr. Van Horn and Dr. Richman are wonderful they are the best pediatricians...very caring and supportive to Brooke and my family!
Brooke's transplant coordinator, Martha, called yesterday afternoon and they had to double her dose of mag and sodium bicarb and decrease her prograf just a little. Her liver function tests are BEAUTIFUL!!! Yeah!!! So our next appointment will be Monday and this one is in DC and we will start with labs and then see Dr. Kaufman.....I will update and let you know how that appointment goes.
I won't be updating as much as things are starting to calm down and get back to somewhat normal life at home. But know Brooke could use your prayers daily and we so appreciate your love and support. As things change or there are updates I will definetly keep you informed! Thanks again, our family is truly blessed!
November 14, 2008
Brooke had her appointment yesterday and all her labs were really good and NORMAL!! YEAH Brookey!!
She is still eating really good and sleeping good. Now she wants to wake up in the middle of the night to eat but that is OK as long as she is eating I will take it!! No complaints on this end.
She has labs on Monday but we don't have to see the doctor for 2 weeks!! WOOHOO!!
Things are starting to get back to normal. Praise God!
November 11, 2008
DISCHARGED!!!!
WOOHOO.....Getting ready to walk out of here!! We are so happy and so is Miss Brooke....she is sitting on Nanna's lap bouncing around smiling with those fat cheeks!! The steroids are making them even fatter, if that is possible! Thanks for all the prayers, he is still blessing us each and every day!
God Is Good All The Time!!

November 10, 2008
Posted some new pictures under hospital pictures.....
8:00pm....I am getting ready to head home and then back up here in the morning to hopefully bring Miss Brooke home! Everything is looking great. Even her weight.....oh my goodness they just weighed her and she is a whopping 14.663 pounds....that is a gain of 5 ounces since yesterday. I knew she was taking a lot of bottles but my goodness!! So prayers that we make it home with our baby girl tomorrow.
HERE ARE THE PICTURES......
BEFORE WITH NG TUBE......
DRUMROLLS PLEASE......
THE IMPROVED BROOKE MARIE WALLACE
11:56am....It is official the NG tube is out after 3 months! Let me tell you it was a BIG event....her room was full of nurses coming to see! They said she is beautiful with it, they just had to come see how beautiful her whole face is without that! Brooke was a little fussy pulling it out but then I picked her up and she looked around at everybody and smiled from ear to ear....then spit up on me! HAHAHA, thanks Brooke The nurses said I have to bring her out and walk her around so everyone can see her beautiful face without the tube! She is napping now but I will when she wakes up and I will post a picture for all of you!
Thanks for all the prayers....God is Good All the Time!
9:35am....Dr. Reckman came in and said I here you are eating like a champ! She asked if she ate through out the night....I said at 11:30pm and then at 4:30am.....Her comment do you want to pull this tube!! WOOHOO YES I DO!!! It has been a long time since we have had this thing of course I want to pull it!! So that comes out today and try to switch her to oral meds and possibly the BIG D word tomorrow.....we try not to say that word around here until it is definate because sure enough something happens so we will just say the Big D day. Can you say Happy Dance!!
WOO HOO BROOKEY!!
7:35am.....Brooke is doing good. She finally hit the 14 mark....she weighs 14 pounds 1 ounce!! With everything going on from surgery and being NPO a couple of days and losing from surgery she is finally on the rebound. She took the six ounces last night and then at about 9ish she lost her IV She has NO veins left....her little body has been pricked and poked so many times they just can't get IVs or labs easy. They do heel sticks every morning....her little foot looks like ground hamburger....so sad. However, the nurse practitioner, told us to only get NICU to redo IVs. Her nurse was fully aware and called them. Around 11:30 last night the NICU nurse came in and one little stick later Brooke had an IV! She took another few ounces...maybe 3 and back to sleep. 4:30 they came to do labs.... She took 5 ounces while they squeezed to get blood and back to sleep....still sleeping.
So hopefully an uneventful day...just hanging out taking bottle after bottle after bottle, changing diaper after diaper, and getting the IV and oral meds, playing Itsy Bitsy Spider, more bottle, more diapers and more meds and then Patty Cake...a book to read with her.......hmmm yes let's just keep it that way....I will be happy with that!
November 9, 2008
Brooke had a really good day. She is still taking her bottle and wanting more. They finally said just now because she was wanting so much and was not happy with only 3 ounces every three hours, she can go up to six ounces every three hours! She just had her first bottle and took 5 ounces but I bet you she will finish that last ounce is a few minutes. So we are just hanging out labs in am, steroids every six hours and those should be done by Tuesday evening or this nurse said Wednesday morning so we wait and see.
Her potassium was elevated this am but the doctor said he thinks it was a false reading. He also was in awe how her numbers are coming down so fast! Prayers can really do that to people because I know it is God's work!
No other news, a quiet day/evening here....no Redskin game to watch end in a victory, no Dallas game to laugh at....hmmm yes a quiet day! :)
November 8, 2008
4:49pm....The doctor just came in and guess what....Brooke will be coming off the NG tube feeds during the day. He asked if she woke up in the middle of the night to eat.....as you all know she never did from day one so he wants to use the NG tube feeding from 11pm to 5am. Then off the rest of the day. She has been on her NG feeds all day and she is taking a bottle every three hours!! So hopefully she will continue and take more now the feeds will be off.
Her lungs are moving air. However, there seems to be some sounds of wheezing. He wasn't for sure if it was "real" but is going to treat her anyway.
It has been a very quiet day and she has taken two good naps. Nurses are so sweet and always talking to her when the door is open. Dr. Kauffman goes out and says...have you seen our little Gerber baby.....so she is known up here as the Gerber Baby. The other doctor with Kauffman says Brooke is their favorite....she has that look and personality that just pulls you to her.
That is all for now, I am heading home tonight so I can go to church in the am and then back up here so Bo can go to work on Monday. Thanks for the many prayers, love and support that continues each day. We appreciate them and you!
9:55am.....We are just hanging out today. Brooke's liver numbers are coming down so we pray this steroid treatment is working. She took 3 ounces from her bottle at 9:00am this morning which is really good for her. Usually on the NG tube she won't take the bottle. I hope this vanilla extract is working. They are talking about trying the bolus feeds today around the clock and using the NG tube only at night....let's pray her belly will handle it this time.
November 7, 2008
4:43pm.....So they just came in and hooked her feeds back up and said they are not going to do the biopsy. They are going to treat her with 5 days of steroids through the IV so we will be up here for another 5 days......better than the risk of the biopsy I think! She took a bottle with the vanilla flavor she was hungry though we will see what she does once her belly if full and they want her to take it. Brooke had another amazing nurse today, Laura, she is SO nice and sweet and just loves Brooke! Also a speech pathologist came in and is going to help us to introduce different taste to Brooke. She gave me this gadget to put food in like a netted thing so she can chew on it and still taste flavors. Also she wants her to chew on beef jerkey, carrot sticks, celerey sticks and the hard cheetos....Chelsie is not going to want to share the beef jerkey! She will be fine! So we wait and see how things go and see what these steroids do. Thank you for the many prayers! I am so glad they didn't do the biopsy! God keeps watching over Brooke and taking care of her and I know that is because of the many prayers that are being said for her. God is Good!
7:40am.....Brooke had a really good night....she was asleep when I got back up here and only woke up between 4:30 / 5:00 this am when they came in to do labs. But of course it was a night I couldn't sleep!
Let me say, you know it really makes a difference when you have an awesome nurse! Her nurse was great! You can tell when a nurse likes her job and loves children, this one really does. She was unable to get enough blood to get all the labs and had to get the doctor to come in but let me tell you , she did her best with what she has with Brooke. Every vein little Brooke has it seems has been used. They had to bring in NICU to get her IV started the other night. But I just want to applaud the nurses that Brooke has had that really love their job and her it truly makes a difference! So kudos to Helena, Erin, Julie and Courtney, we love you guys! Oh by the way the doctor was only able to get the blood because he went through the artery. He is great too!
Looks like her feeds have been just cut off to prepare for the liver biopsy. I asked if it has been scheduled and she said usually they are but she is not sure when Brooke will have hers. She said hopefully by lunchtime.....I hope so or we are going to have one cranky baby with no food on the belly!
I will update as soon as I hear from the doctors. I hate the fact that they have to put her under for this liver biopsy but good for her she wont feel it! Prayers today that all will go well!
November 6, 2008
9:40pm....My apologies for not updating. I left late last night to go home. Both Chelsie and Dustin are sick with a very bad cold. Plus mommy was missing them terribly as I have not seen them since Sunday! So they were both home from school today and we had a very nice day together with Nanna and Pappaw.
Brooke is doing good. Her liver enzymes are down tremendously. The steroids they give when you have rejecction is working. Now they are talking and want to do a liver biopsy tomorrow morning to see if it is rejection or if something else is going on....something viral or some kind of infection.
They are trying to get her to take this awful formula by bottle. They are so good here they went and searched everywhere for something to flavor her formula with so she will take it. One of the nurses actually went to the store on her way home last night and brought back something this morning....... Brooke hates it. Bo said it was something like peppermint! So I brought up some vanilla extract and they want us to try that. Her formula can be purchased in a vanilla flavor so if she likes this I will buy that kind. I just bought 2 cases of the other stuff....I can use that for her tube feeds and the other for the bottle. All on if she likes it or not. Here are just a couple of pics from my cell phone of Brooke this stay....I forgot my camera hookup to download those.
This is when the ER said...Brooke Halloween is over.....They were calling her there Rambo baby!
Here they took her little fingers, because of an IV and so we tried to soothe her with a binky....HAHAHA her words exactly she laughed and started biting it then spit it at us!
This just shows no matter what.... she is always smiling and the happy beautiful baby she is! As my friend, MeMe said today she is AMAZING!
November 5, 2008
6:42pm...The nurse practitioner came in and said that her liver enzymes were up.....we knew that. So here is the plan, they are going to do an ultrasound/doppler on her liver and see if the liver is working correctly. They are also going to repeat the labs and see if maybe they were just off. If they are still elevated they are going to more than likely do a liver biopsy tomorrow morning before 11. This could mean rejection or they said where the JP was falling out may have irritated the liver and caused these readins. So we are just going to wait and pray that everything is OK. Lots of prayers please, Miss Brooke needs them right now!
1:24pm....The JP drain is out!!! YEAH Let's just pray no infection!!
11:50.....The doctors came in and said that if her white blood count goes down, no fever, the surgeons take out the JP drain....maybe just maybe we can get out of here.....no word on her liver enzymes I think they are going to wait and do more labs probably in the am and see what they look like..... Her lungs sound great! Oh and they are trying really hard to see what they can add to her formula to get her to take it better orally.
8:00am....Prayers please.....Brooke's liver enzymes are elevated and they are not sure why. It could be that the labs were not right or not accurate or the antibiotic could cause it. They said she is not showing any symptoms of the pneumonia or any other problems. There plan before the liver enzyme issue was to send Brooke home possibly!!! Shucks! Good thing we are here though as we want the best for Brooke. We want her well before she goes home. So please pray that these liver enzymes get better really soon and this JP can come out. Dr. Matsumoto is going to be up here with the nurse practitioner today....not sure if all day covering for Kauffman or if Kauffman will be back later. So we sit and wait and play Itsy Bitsy Spider some more!
5:28am.....Brooke's IV stopped working at 2am. They were going to put another in but thank goodness I was awake and told them that Dr. Kauffman had mentioned putting her on oral antibiotics yesterday but decided not to but not sure why can we see what he says before we go in and stick her. The nurse, Erin, who I wish I had ALL the time who is amazing, said we can page Dan the resident....he said yes keep it out atleast until the morning when Kauffman comes in and we will go ahead and do oral antibiotics until he decides. YEAH!! He did say that if she goes down and have to have the JP drain placed back in, she will need another IV....let's pray that is not the case. Let's pray the hematoma is gone, the IV can stay out, she can stay on oral antibiotics and Miss Brooke and I can go home if not today then tomorrow!!!! I miss my other two as I have not seen them since Sunday....
I will keep you updated.....oh she slept really good and did really well when they were getting labs this am.....(she had her two little fingers back to suck!)
Make Your Voice Heard.....
GO OUT AND VOTE!!!

November 4, 2008
8:50pm......The doctors just came in and they said her lung sounds really good. Her white blood count is elevated and that has him concerned but he isn't sure why. I asked could it be the JP drain....he said maybe. It actually has pulled loose as Bo and I went to change her and noticed white on it close to her skin....the doctor said it was out. She had an ultrasound this afternoon and they are going to look at that and contact the surgeons and decide if it needs to be placed back in ot the excess blood needs to be just drawn off with a needle. They will let us know their decision as soon as they know something. Bo asked if there was any possibility we could go home tomorrow, he said he wanted to take a look at the ultrasound and talk to the surgeons but count on Friday......FRIDAY!?!?! They are not doing anything I can't do at home, very frustrating. I will talk to him when he comes in and see why Friday and not tomorrow or Thursday. I will let you know...... 1:00pm....I just got back, I went home to vote and now I am back! Brooke had a smile from one side to the other. She is the sweetest. She has not been taking the bottle only the NG feeds. The formula is yucky, so I asked if I could give regular formula from the bottle and they are going to check with the doctor. She has not thrown up since we been here but her white blood count is really high so they are not sure what is causing that. She still has her JP drain and there is a risk that it can cause infection so I wonder if that could be it. They are going to be rounding soon so hopefully I will know something very soon. I will update as soon as I know!November 3, 2008 8:41pm....The doctor came in finally, they had an emergency and there was a really sick kid on the floor that I believe had to go to PICU, so I understand and forgive teh doctor now. Brooke's drainage from JP came back and there was no bili! Fabulous news, as the surgeon thought there was a leak because of the green color. Thank goodness it wasn't!They are going to start her on the formula feeds and see what she does. She is tearing up some pedialyte....Bo went out this am and got two bottles from noon until now the bottle is gone! Go Brookey! Let's see what she does with the formula though! Her lungs are clearing up, she is still working when she breathes and takes her bottle. Her heartrate and resp. rate are down from yesterday though. Her blood pressure has been a little elevated but not like it was last admission. She is taking more pedialyte until the nurse comes in with her formula. Just finished her CPT...(beating on her chest to open her lungs up)....so I think she will go on to sleep now so we can watch these Skins beat the Steelers.....did you see the opening kick......WOW....GO SKINS!!!!4:52.....The surgeon team came in for maybe 2 minutes...they are going to send her JP drainage to the labs to check the bili levels. It is looking different than earlier. So that is sent we are still waiting on the doctor to come in no news on him yet. The nurse was concerned she was drinking too much pedialyte but the doctor told her she was ok....he mentioned to her he was going to try feeds(formula).....I guess we have to wait fer him to make it in here first.....they are really busy, it was empty when we got in here and now they said they are full....WOW...I know there were 4 transplant patients in the ER when we were there yesterday.So we are just hanging out....Bo is getting really bored being silly making Brooke and I laugh.....so as soon as the doctor makes it in here I will let you know the plan. 8:30am.....No news yet, waiting on doctor to come in. We were to have her appointment today and she was going to be on the floor anyway for an IV med. So it was good she already has an IV and will go ahead and get it today....no extra sticks. Also some good came of visit, I was able to upload the softball pictures and some of the golf tournament....then it wouldn't let me finish the golf ones so here is a link to the pictures I have. There are still a couple more cameras I need to get so I can download them too. As soon as we get back home we will get them and upload. The link below are the golf pictures if you want to view them. We thank each and everyone of you for coming out and supporting these events we appreciate and are truly greatful.http://www.kodakgallery.com/ShareLandingSignin.jsp?Uc=10zqitkr.3gpcg423&Uy=n7ykrb&Upost_signin=Slideshow.jsp%3Fmode%3Dfromshare&Ux=0&UV=684867347521_620804571211&localeid=en_USOther than that it really was a quiet night. I didn't really think I was going to spend my 12th wedding anniversary on a tiny pull out couch with me at one end and Bo at the other and his feet in my face! URRRGGG.....but I can guarantee you it will be one we will never forget!! I will update through out the day and let you know if anything changes.... thanks again for all the prayers!November 2, 2008 4:42pm....We are still waiting for Dr. Kauffman come in and see her. He did see her from the door and said that it looks like it is only the pneumonia that is making her throw up. All her liver labs look great! Good news....didn't know she had pneumonia. ER just said the lung didn't look quite right. So we wait for the doctor to come in and tell us the plan. Here is her first ER visit picture....We are on our way to Georgetown. Brooke has been throwing up since yesterday just now it isn't with her coughing. We try to give her meds and it comes up. She threw up 4 times throughout the night. I called her doctor and they want us to come up there to the ER now. She is not running a fever so that is a good thing. I am taking my laptop and I will keep everyone updated as soon as I know what is going on. It isn't good she can't keep anything down. They want me to give her pedialyte on the way up too. We are out the door......Today is Bo and my 12 year anniversary.........remember I spent my birthday at Hopkins when Brooke had her Kasai, Bo's birthday she had her transplant and now our anniversary we are going to the ER. She just loves to make statements on special days.....November 1, 2008 Today is Dustin's birthday and that is pretty much the only thing to report. He turned 9!Brooke is doing good.....a little bit of throwing up when she gets to coughing alot though. We go on Monday for her appointment and it is going to be a long day! She has to get an IV and a medicine that will take a few hours to finish. On Thursday we have another appointment and an ultrasound to see if the hematome behind her liver is draining. Her JP is filling up still so I think it must be getting smaller in size. Other than that things are getting quieter! Thank goodness! OH I ALMOST FORGOT THE WINNER OF THE HALLOWEEN CONTEST WAS.............Not a good picture but I will upload the better ones from my camera sometime soon and get on her site. Thanks to all who voted she looked very cute. We had to run to Georgetown yesterday....and her transplant coordinator and others saw her and really liked her costume! October 30, 2008 4:05pm....Jessica and I took Brooke to see her wonderful group of doctors and staff at Georgetown. We had labs done and then saw her transplant coordinator, her GI doc and then Dr. Matsumoto, the surgeon. She still has her JP drain....they want to keep it in since it is draining. (YUCK) Her labs were all really good except her prograf levels are still low and they bumped that med up again. They are coming down on her prednisolone though. She didnt gain any weight from Monday either. :( Her cold is really awful. Her nose is running like a river, her cough sounds like a bark, and she is sneezing a lot too. Atleast she is getting it up they docs said so that is good. The transplant coordinator mentioned when she left, it is babies like Brooke that make you say this is why I like my job! We so love her, she is the sweetest! We will use a humidifier, nasal saline solution, and syringe her nose! YEAH she will just love me! :) Other than that she is doing good. Nanna just got her to eat a half of container of squash! She likes coke too.....oops....:) just a little bit.....SMILES.October 29, 2008 9:10pm.....Still having trouble getting those softball and golf pictures up! URGGG I did manage to get her coming home pics up...go figure so strange. You can check them out under HOME SWEET HOME!! I will try again to get those up from the tournaments tomorrow. 6:22pm....Hey everyone....Brooke does have a cold her nose is running like a river!!! I called Martha, her transplant coordinator, and she said as long as she does not have a fever and is not in respiratory distress she is fine until they look at her tomorrow. She doesn't have any of that so we are ok. They asked that I use the syringe and run a humidifier. She is resting right now in her little peek a boo outfit my friend Evie got her last Halloween! (Thanks Evie) Here is a picture....9:09am.....Brooke might be catching a cold her nose is running and she is a little fussier today than usual. No fever! We go back for clinic tomorrow for more labs and we can see what they say. Please pray for Brooke. October 28, 2008 Brooke had an ok night. She woke up about 3 or 4 times during the night and crying then she goes back to sleep. I think she is all messed up from the nurses coming in the middle of the night waking her. So hopefully in a couple of days she will be back to sleeping better.I am trying to get some housework done and getting what I can back to normal around here. Brooke is sleeping in her cradle in the living room....still fits in it.....hopefully that will soon change! I am going to try really hard to get some pictures up today....softball, golf, Brooke.....I hate dial up and they do not offer verizon high speed on my road yet.....a little down the road a mile they do! SO STRANGE! I am going to look into WIFI....After the hospital high speed I am spoiled!Again thanks for all the prayers, meals, love, support and everything everyone is doing for our family! This is a very trying time but God has so blessed us! We love you all and appreciate you caring as much as you do for Brooke! She has touched so many people's hearts! And you have touched ours! October 27, 2008 7:30pm...Martha, Brooke's transplant coordinator, called and said all her labs looked great except her Prograf. This is her antirejection lab. She said the doctor said it was too low so they are going to increase her from 2.6 to 3.2. They said they took into cosideration that she was throwing up her meds and we were trying to get her on the 10am 10pm dose from where the hospital had her on the 5am and 5pm dose but really think they need to increase the dose and we will see what Thursdays labs show. Otherwise, everything looked great!! YEAH!!!
Happy Birthday Brooke!!
Brooke is 8 months old today!
2:58pm....We just got back from Georgetown and Brooke's appointment went good. She is weighing in at 13 pounds and 9 ounces. She has gained 3 ounces since discharge on Saturday!Her blood pressure is elevated so they did increase her blood pressure medication. Her white blood count on Saturday had gone back up to 26 and today it has dropped to 17! GREAT NEWS!Everyone there is SO nice and pleasant, we even saw two of her doctors from when she was in PICU who had to stop and say hello to Brooke! Thank you for all your prayers as God continues to bless Brooke and our family! This is all His work and was all on His time! Thanks to Him and Jessica, Brooke will have many more birthdays in the future!October 26, 2008
Wanted you to see God's work.....
BEFORE:
AFTER:
6:10pm.......Brooke had an ok night. She woke up several times crying and one point she did throw up. I checked her temp no fever and that is what they said watch out for. Then this am when she got her many meds she threw up....I was wondering if it was just too much on her belly. No more throwing up though! Bo stayed with her today as I was at the hospital.....my dad was having some chest pains and was admitted to Mary Washington Hospital. Please keep him in your prayers. We get one out and then he goes in.
Brooke has an appointment tomorrow so I will let you know how things do as soon as I can. Thanks again for all your prayers!
October 25, 2008
12:20pm....
WE ARE GOING HOME!!!
Wow, I am SO happy! What a two week, 2 days, 19 hours 25 minutes this have been! But let me say we could not have done it without the many prayers, love, support, visits, phone calls, messages on her site, and all the help with Chelsie and Dustin! I am so thankful for each and everyone of you in my life. Even all the many new people that we have met that have been touched by Brooke and this journey we are on.
It doesn't stop here. This is a long bumpy road we are on and the first year is the most important. Trying to get her medicines just right to fight the rejection, getting her feeding without the NG tube, the many labs and appointments, so please keep Brooke and our family in your prayers. God has been so good to us through all this and has never left our side! He has changed my life in a way that I never thought he would have but I thank Him and love Him and know he is making me a stronger person because of it!
Doctors orders......I know each of you are wanting to visit and see Brooke. I talked to the doctor last evening and these were the orders....please do not take offense to them, think we are asking you to stay out of our life, do not care to see you because that is DEFINETLY NOT TRUE! We have to look out for the best interest of Brooke and this is what they said. For the first couple of weeks have everyone stay away and let Brooke get stronger and let them get her antirejection meds tweeked so they are at a good level. If anyone has a little sniffle a scratchy throat anything they think is just minor...runny nose etc. pleae stay away. It is minor to your body and you have all the things to fight them off....Brooke does not and it can be treturous to her. Not being mean, following doctors orders and looking out for Brooke. I asked if we can go to church. The answer was yes but do not let anyone touch her or hover over her. We are so happy to be home and want to get back to our "normal" life but at the same time really have to be careful for a few weeks/months and year!
Again, we love you all and so appreciate each and everyone of you and all you have done for Brooke and our family. We so want you to visit and be a part of Brooke's life and a part of watching her grow up but we really just have to give her some time. Give us a couple of weeks and we should be good for visitors! Thank you and thank you so much for the prayers.....God answered once again the 50/50 chance in coming home it was in our favor thanks to the many prayers!! God continues to bless our family!
YOU ARE ALL AMAZING AND AGAIN KNOW WE COULD NOT BE WHERE WE ARE TODAY WITHOUT EACH ONE OF YOU! WE LOVE YOU ALL!
October 24, 2008
7:33pm....Let me start by saying WOW and THANK YOU! The golf tournament was amazing! We had over 130 golfers! There are so many people to thank from my best friend, Stacey, who took over this HUGE event and made everything just perfect. I could not have done a better job! Your hired for the second annual golf tournament ; )!! Meadows Golf Course, you guys were so thoughtful and great! Everything was so nice and run so smoothly!! The golfers...wow I never thought we would have the turn out we did and I thank you from the botttom of my heart for each and everyone of you for coming out in the cold and taking time out of your life to support our family! The many helpers! Thank you so much for all who contributed in helping out and making things move so smoothly! There were so many helping there are too many to list but you know who you are and thank you! Again, each one of you had a special part in this event and it did not go unnoticed. Bo and I talked about how great everything was all the way up here to the hospital! THANK YOU SO MUCH!!!
Now with that being said on to Brooke!! Looks like it is now 50/50 she will go home tomorrow. Her white blood count is a little elevated again from 19 to 16 back to 19 maybe 21. So we really need to pray that whatever is going on will go away! Also they changed her formula now to what they call...Simalac is the Ford of formula and she is one that is the Mercedes of formulas....Thanks Brookey! Her magnesium is low and they had to give her some of that too.
Please pray as we really want to get her home but we want it on her terms not mine! The doctor said we are almost there they just want to make sure. Thanks for all your love and support and prayers. And again thank you to all the golfers, helpers, and Meadows Golf course for a FABULOUS day!
My mom and Chris are staying with her today so i can go to the golf tournament. I will be picking Jes up and head on over.
Brooke is back on her regular feeds. She was not doing good with her bolus feeds....she threw up and then she was a little dry...dehydrated. So they changed things around. The doctor also changed the formula.
Otherwise she is smiling and happy. Not alot of sleep they come in ALL the time! OK I will go for now and be back this afternoon.
Prayers we get good news when we get back up here to maybe go home!!
October 23, 2008
7:03pm.....Her feeds work this way, they give her a 4 ounce bottle and she has to take whatever she can by mouth. Then when she won't take anymore they pour it into a syringe and hold it in the air attached to her NG tube and it goes into her belly until the bottle is empty. She tolerated the first one...she drank two ounces and then the other was put in that way. That was all done by 2:00pm then at 4:00 they did it again....way too much she tried pour thing and she drank 2 ounces by mouth and they did the remaining two by syringe and by 5:15 up it all came. Now they just hooked her up to the continous feeds until morning as this is what i will have to do at home. It is going at 54ml and hour. We will see how she does, this is more then what we had her on pre-transplant. Otherwise all meds are going orally and she is doing great. Her transplant coordinator came in and brought all her meds she will be going home with.....WOW!! She will go home with 10 and once a week she will come back to this floor to have one put in through IV over a 4 to 6 hour time frame. That will be a long day. Otherwise very quiet day. I even snuck a small nap in while she was napping. Which was GREAT!!
I will try to update in the morning before I go back home for the golf tournament but if not I will when I get back first thing. Hopefully.....we will her the BIG D word tomorrow and I will be able to load up and head out when I get back! Prayers please!
12:45....Looks like there will not be a PICC line. They are thinking she can come off her IV antibiotics! WooHoo. Not in stone but looks like so far so good! They have stopped her feeds and are going to let me try to feed her when she wakes up. She will only be on the NG tube for 10 hours at night! Actually the nurse just came in and said we are to feed her at 6:00am 10am 1:00pm 4:00pm and then at 6:00pm....the first one to start at 1:00...and it is the pregestamil....hahaha that should be real fun! She has a WONDERFUL nurse today and last night! She really hasn't had any bad nurses now that I have some rest and I look at things......I am sure I was not very pleasant without my sleep(you guys who know me know when I don't have my sleep how I get) and I was a little more "vocal" about poking Brooke and bothering her when she had just went to sleep. They have their job to do and they were only trying to do so.....I just wish they could do everything all at once. So with that being said....I knew she was going down for her afternoon nap so I have learned them....I did the blood pressure, temp, and diaper change. She is resting and when the nurse just came in I told her I already got her vitals so she can sleep. She said I was funny.....hmmmmm I didn't think so I am thinking ahead and learning those guys! !
She also brought in some cereal and bananas for me to try to feed her too! Yeah!!!
IV antibiotics are stopped and she also brought in her oral ones for her to take....YEAH Brookey!
Jeremy Jessica came by, Jessica had her appointment and everything was good. She looks great! I will post pictures later on. Brooke and I enjoyed having their company, even though Brooke was a little fussy....so much going on....I am sure she is still sore, she is teething, she has a diaper rash from the meds, and not to mention tired of being poked and looked at! Poor little thing.
They are talking maybe discharge Friday if not more than likely Saturday. She did have an ultrasound and they are checking to see that build up of fluid around her liver. They also said the JP drain may come out before we are discharged since so little is coming out! YEAH one less tube/drain.
7:31am....Brooke is going to have an ultrasound sometime this am. They want to check that hematoma and see if it has gotten smaller. Her drain is just not draining anymore. I asked about the PICC line and looks like, prayers please, her last dose of antibiotics will be today so she may not need it. The surgeons will make the final decision if she needs more antibiotics or not. Let's pray she does not!
I don't know how when Bo is here she sleeps very well. My nights, nope wants me to hold her! I don't mind except for the fact I do need some sleep too please! :) She has to be out for me to lay her down....I got an hour of sleep and here comes the nurses for vitals and labs. Brooke was able to go back to sleep.....not me.
I will keep you all updated on everything today....
October 22, 2008
I know I am very sorry for updating so late!!! I went home last night to get some much needed sleep and take care of last minute things with the golf tournament while Bo stayed the night with Brooke. I hated leaving but it was good to see Chelsie and Dustin and family. I asked Bo to update.....hahaha you see how far that got! :)
When I got here Bo said Brooke's JP drain had almost stopped draining. Normally that would be good. They are concerned about that hematoma around her liver and are going to check tomorrow with a CT to see if it has gone Monday and Thursday, for awhile for labs and check ups.
Other than that she is in my arms as I type, playing with my Faith necklace...thanks Jo she loves it too!!!
Oh she is scheduled still for a PICC line in am not sure the status on that. All the best and I will update in am.
October 21, 2008
3:44pm.....They took the line out of her neck. They might have to put a PICC line in Thursday. She cried for a good hour. They gave her Tylenol. Then her daddy got here and she was a different baby! I told Bo it was the tylenol....he says it was him! :) I am just glad she is happy.
They are going to let her have some cereal and bananas. She would't take the bottle for me, but they haven't stopped the feeds (NG) either.
Her heartrate has come down some more but still not where they want it. BP looks good though.
8:08am....Wow what a night. Remember my night right before transplant.......almost as bad! So shift changed at 7:00pm and the new nurse started. Everything was all good, then the doctor was concerned still that her heartrate is still so high runs in the 170's and 180s. So he talks about his plan and what he wants to do. He wants to start a bolus of fluids and then run them continuos thinking she might need it to get her heartrate up. He talked about more blood too. Well the nurse comes in. The line in her neck had not worked since we got over here so it had been heplocked. The night nurse tried to use a different line that the nurse over at PICU, the only one I had issues with, placed on Saturday. (In her hand that she likes to suck her fingers with after I said please leave that hand free....oh well is what was said!) :( Well they hadn't used it since she put it in. So they went to use it and I looked down and it was bleeding. The nurse pulled it. So they had talked about trying to get the one in her neck to work again....putting some med in it to open it up. At the meantime PICU comes over and says they are going to put another IV in. I was like wait a minute you put the one in and never used it and then it didn't work you are trying to get the one in her neck, which is very sore and uncomfortable for her, to work why poke her once again. We discussed this for quite some time and they said they had to get access now to start the IV and the one in her neck could take hours to get working. The PICU nurse was great she hit it right away and got one in.....I just hated her getting poked again! She was very upset! So I tried to calm her down took a good 45 minutes of crying straight. They had stopped all pain meds said she didn't need them. Mind you, Jessica is still sore and uses Ibuprofen, Brooke's surgery was different and I know she is still sore! So after trying to calm her down for close to an hour I ask for pain meds for her. They gave it and she calms down. Enough for the nurse to come in, right away, to try to get a temp and blood pressure. URGGG I was so mad! I let her attempt as I was holding her until the blood pressure read 163/102! Yeah she wasn'g going to get one and I wasn't going to let her try again. She was very upset! So I took the cuff off removed the thermometer and said look you guys have got to give her time to collect herself and calm down. Let the pain meds work and then we can try again. The very nice nurse, Courtney, who helped me the night before surgery came in and was helping. The nurse looked at her and said mom refuses to let me get vitals. I just sat there and ignored the whole conversation. The one nurse left and I calmed Brooke down and layed her in the crib. Courtney said we need to get an EKG I said Ok she seems calm now(lapse time 20 mintues). While she was getting the EKG, Brooke smiled and coo'd. She was so much better. Just needed some meds to get the edge off whatever pain she was in! She finished the EKG and I got her temp and blood pressure. I wrote it on the board. The nurse came in and saw it looked at me and walked out. :) Courtney then tried to get that line to work and again another time. No luck so it is coming out today! I will make sure of it. I am Brooke's advocate and sometimes mommy knows best. The doctor is great he always comes in and ask me...Mrs. Wallace what do you think you know her, is she in pain, is she herself, etc. So after 11 days here I am speaking out for Brooke. OH forgot this one.....at one point a nurse came over from PICU that had her and knew how the line in her neck worked so she was coming to try to save it. Brooke was fussy and crying at this point too. The nurse rolled her over on her side and stuck her finger in Brooke's mouth. Not a little bit down towards the back of her mouth! I was like what are you doing. Last night she tried to suck my finger....WHATEVER!!! She was trying to make her be quiet and I was livid.....she knew it too and she left and said nope it is not working!
So I finally got to lay down at 4:30am and try to get some sleep. Yeah right. Very Frustrated.
Her heartrate did come down to the 150's and actually 120's when she was resting. I will see what the docs say this am about it being high. They changed her blood pressure med to see if that can lower her heartrate too. They are going to still talk about giving her some blood today and see if that is what needs to be done to get this rate down. Liver, great they keep saying how beautiful it was and how perfect it is working! They keep asking about Jes. Actually, her nurse last night was roommates with the nurse that took care of Jes. She said they have been waiting for her to make it over here. After last night, I bet they are saying send her back! :)
Actually, everyone(PICU and Transplant nurses) talk about how beautiful she is. They make over her and all want her as a patient. They are very excited when they come in and have her as a patient. 99% of them are fabulous nurses!
So I wait and see what the doctors plans are today. They did talk about changing her feeds around so I am feeding her from a bottle most of the time and on NG tube at night!! They are talking discharge.....Projected date Friday/Saturday....but if not maybe the beginning of next week. I will wait and just be surprised. I hate to think I am going home Friday and then not for a week! So I just wait and hang out with my baby girl and see when she tells me we are going home!
Prayers for an uneventful day!
Halloween Costume Poll...
No new news so on a lighter note......We need help!! Trying to pick a costume for Miss Brooke's first Halloween. These are the ones we are down to. Can't decide! So please participate and pick your favorite costume for Brookey!
Here are the choices.....
1 2 3
4 5
Please Vote.....
Top of Form 1

DAY 2....What costume should Brookey be. Please vote.
Chicky
Tootsie Roll
Snail
Super Woman
Elephant
View Results
Bottom of Form 1
October 20, 2008
12:50pm....Just got update on Jessica, she is doing great in her words! She has been able to go to her daughter's softball tournament this weekend which is FABULOUS news! I am so glad she is doing so much better. Thanks for all your prayers for her!!
12:33pm....Dr. Matsumoto and his team came in. They are going to send her JP drainage to be cultured and check the bili levels in it. As for the hematoma they are going to wait. They feel her white blood counts have come down and they say it is better to leave it then mess with it. So please pray that all will go well her labs will come back good and this hematoma will thin out and adsorb into the body. Otherwise her heartrate is still elevated but no fever! She is trying to sleep. It is nice to be over here but at the same time it is like starting all over again. Everyone has to come in and check on her and they are in all the time! They ask if she has slept any...HAHAHA I said no because people keep coming in. Hopefully now she is not due for any more meds until 2, which she is taking all orally, they will stay out until atleast then! We will see. She drank a little from the bottle not a whole lot but a little! If she starts drinking she can come off the NG tube.
OH before I forget....checked out the bathroom situation, LOVE IT! My own shower my own vanity in the bathroom for all my STUFF! WOW this is the best thing since sliced bread.....funny the things you take for granted until you don't have them! Now if we can just work on the food thing!
Thanks again for all your prayers and support! Thanks for all the comments and texts about the montage under the video clips....I didn't mean to make you guys cry but wanted to share the journey and blessings God has bestowed on us thus far!
11:25am.....So we made it to the other side!! WooHoo. It is so much nicer over here. We still have our own private room and it is so much better. There is a pull out couch ,two gliders and a chair plus a little table. Little living space.
We still haven't heard anything from any doctors yet.
7:25am....She had an OK night. nurses and beeping and whoever else was in and out all night. Her heart rate is up again this am. The CT showed that the hematoma is still there and the same size. That came from the nurse, I am waiting for them to make rounds to let me know what they are going to do about it. Personally, I want it out. I will talk to the doctors too. They did more labs early this am so we will see what the white blood count looks like too.
Otherwise, she is very happy this am smiling and cooing and playing with her little pink rabbit....thanks Bledsoes she loves it! When the doctors round I will let you know what the plan for today is....probably go to the other side.....hahaha yea right. Meatime I am gong to jump in the shower before I get locked out again....beat them to it!

October 19, 2008
5:30....She's back! Wow that was quick!
5:15pm.....Brooke just went down for her CT and we wait to see what is going on. Her heartrate and respiratory rate have come down from this am which is good. Also they changed her antibiotics. They also said they got the line out of her leg which was a risk of infection because of it being so close to her diaper area. So we wait and see what the CT shows and see what the surgeons say and go from there. I will keep you updated.
11:18am....The GI doctor just came in and said her white counts are really high so she thinks the hematoma that is around the liver may be brewing something so they are going to order CT of her belly and see what is going on. She is also going to consult with the surgeons and see after the CT if this needs to be drained or what they want to do. They changed her antibiotics to something stronger. Prayers again please that whatever is going on will be fixed and she will be OK!
8:06am....We had a great night! No sleep for me but great night! Brooke is now off morphine and switched to oxycodone(? spelling). She slept beautifully and comfortably! I helped the nurse getting the line out of her leg out of her head and then another nurse but the IV in her hand (Her sucking finger hand :(, but they tried to fix it for her so she can still suck them) So she is down to only the IV in her left hand, the big line in her neck and then her JP drain which they say may come out soon. We have not moved to the "other side" yet. The nurse also changed all her dressings and she would sleep through most of it. She had an xray this am at about 6am also. She is wearing her own pajamas and is so snuggly in a crib now! I posted pictures!
Also, since I could not sleep last night I put together a montage of Brooke's life up to this point of her little 7 1/2 months. I posted that under her videos. I hope you enjoy it as much as I did putting it together. It was good therapy for me to go through her little life and go through so many memories with her and then to sit back and thank Jes so much for giving her a second birthday and a second part of her life now! Without Jes Brooke's life would have been cut so short now she has another chapter of her life and so much more to live! Words from a mother just can not express that feeling! You, Jessica, are AMAZING, the nurse and I were talking about that this morning to be able to give a gift like that to someone is just beyond words! THANK YOU THANK YOU!
God has so blessed our family. Truly he has! I see and hear so many people blame God. Wow, I thank Him. This journey in my life has made me such a stronger person, stronger physically, emotionally and spiritually! God has NEVER left my side. He has put his arms around me, embraced me and walked beside me and taught me SO much. Thank you God ,Thank you for your love, your guidance and your will in my life! Thank you for my salvation, because without that I would not be here where I am now! I always asked how do people make it through life and journeys like this without GodI I really do not know, because I know personally when I gave him all my worries and fears and heartaches, I have true peace! Trust in the Lord with all your heart, and lean not on your own understanding. In all your ways acknowledge Him and He shall direct your path. Proverbs 3:5-6.
Thank you for your continued prayers and support. God is good and he is so blessing our family and taking care of Brooke!
October 18, 2008
7:27pm....Now that I am by myself and Brooke is resting comfortably I want to take a moment to thank Freddie and Diane for putting together an awesome softball tournament. But then too, all the many helpers that helped them get everything together and helped them with everything to make it run as smoothly as it did. There was a lot of hard work put into this effort and I appreciate each and everyone of you for your part. From the people who helped with the consession stands to those who helped with the Bakin for Brooke sale, to the umpires, the photographer(I will post pictures as soon as possible) to the ones who donated and helped with the raffles, to the players and coaches, the scorekeepers, the spectators....it truly was an awesome day and I was glad I was able to be there! Thanks mom and sis for staying with Brooke so we could get out of the hospital) Please know Bo and I appreciate each one of you and thank you from the bottom of our hearts! It showed the community coming together for our baby girl! That means more than words can say!! Thank you!
6:14pm....I made it back up here and the doctor caught me at the desk and said Brooke will be moving to the Transplant side either tonight or in the morning!! WOOHOO GO BROOKIE!!!!!!
Also, Jessica is doing so much better! Switching from Tylenol to Ibuprofen was like night and day she said! I am so glad it worked for her and she is feeling so much better. It was nice to talk to her and hear that she was feeling a lot better then the last time I had talked to her!
11:35..... They said chest xrays look good today. yea!!!!She is doing great.Enjoying her Nana here today. And her Aunt Sherri!
6:29am.....Brooke is doing good. Quiet night....yeah right!! We can now shut her door since the vent is out! WOOHOO! They tried to get labs this am but failed the line they have in her leg won't draw back so that means they are going to have to poke for a vein and do it the regular way. Her blood pressure is up so she is now getting meds for that.
Around 10:15 last night she had some blood coming from her mouth. My heart dropped and I got the resident. She came in and thinks it was just from them putting in the NG tube! I have not seen anymore so I pray that is all that was!
I will be going home this am and going to the softball tournament for Brooke. My mom, sister and I think sister-n-law are going to come up and sit with her so Bo and I can both be there for the tournament. Thank you all who are participating!! We appreciate all you are doing to help our family! Thanks Freddie and Diane for organizing and putting this all together for us! Your hard work and thoughtfulness are greatly appreciated.
I will try to show my sister how to update and see if she will post them for me since I will not be back up here until this evening. We will see how well she does! :) Jess use to take care of updating for me when I couldn't but I don't think she is up to it quite yet! We will also be going by and checking on her so I will have an update on her this evening too.
October 17, 2008
5:46pm....Feeding tube is in and they are going to start feeds. They are going to use Pregestamil. I tried to say Enfamil but they want her to use something they know she tolerated before and then will try the Enfamil. I pray she tolerates it and can go to the Enfamil again. She liked the taste of that better. The pregestamil is so stinky and nasty and not to mention EXPENSIVE!! Doctors joke it is the cadillac of formulas. I knew when she was named with the initials BMW I was in trouble! :)
Someone posted this on Liver Families and Eme who I hope all is praying for has it posted on her site. I fell in love with it and had to share with you!
The Brave Little Soul
Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. God and the brave little soul shared a smile, and then embraced.
In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased. ~ John Alessi
3:41pm.....The surgeon came in and said he was not concerned about her JP drain and said that he thought everything was fine. She had a bad bleed the night after surgery so he said that all that has to come out! He said she looked fine and to try to start feeds again. He then said she looked like her mommy! Wasn't that sweet, I think he was trying to up my spirits and make me feel better. That is fine I will take it! She is a little fussy but all and all getting better. She is just taking her time! Thanks for praying, God is So Good!!!
1:42pm...... So we are still waiting on the surgeons to come in....Bo said oh yeah they did say the lung was clearing up nicely! Which is Good news! Her blood pressure is elevated so they gave her some meds to try to get that back down too. Her O2 is 100% with only a 1/2 liter of support! YEAH! So good news! I am still quite worried about the bleeding but sometimes I have noticed the PICU docs are more causious then the surgeons but I still need to hear from them what they think is going on. I hope it is Dr. Fishbein or Dr. Matsumoto that come see her they are the best and I trust them with any decision they make!
Brooke needs prayers! They are thinking she might have some internal bleeding going on. I would hate to see her have to go back to the OR! We are waiting on the surgeons to come in and make a decision. Please pray!!
October 16, 2008
5:16.....The doctors came in and Brooke was really fussy. It is weird because they just gave her morphine and she should be fine. She hadn't had any since this am. I am thinking she does not like the morphine. I know I do not like pain meds they make me feel funny! They let me hold her nad she coughed a lot and was clearing her lungs. When I layed her back down she seemed a lot better and she is resting comfortably. They just came in to do some respiratory therapy on her right when she had fallen asleep! ARRRGGG! oh well they are helping her get better right?!? The nurse popped in too and she said she looks a lot better and says she is doing better! They still have not made a decision about her line in the leg and placing one in her neck. I also asked about eating they said maybe tomorrow! Dr. Matsumoto, Jessica's surgeon, came in and said she looked great too. Oh and they have her down to 5 liters of o2 they are slowly weaning her off!!! YEAHHH!!!
PRAYERS!!!! Earlier I posted a prayer request for a handsome little guy Xander who is at Johns Hopkins waiting on a liver! Guess what, he is in surgery as I type!!!! At 2:56 he was in surgery! Please keep Xander and his beautiful family in your prayers! We all know what they are feeling and going through so pray pray pray! His website again is... http://www.colbykids.blogspot.com/
GOD IS SOOOO GOOD!!
2:36pm.....I am sorry I am just getting to update. I went home with the kids last night for the first time and Bo stayed up here. I had a doctor appointment this am so now I am back and ready to give an update.
She is having a lot of withdraws. Her lips are twitching, her eyes are going crossed(better than yesterday), she is drooling alot and now her feet and legs are cold. They said this is all because of her withdraws from the drip. Scarey but they say normal. They are giving her morphone now since she has not had any since this am. This should help with the withdraws. Otherwise, Bo said the doctor will be in shortly. Her central line in her leg is clogged and they are going to take that out but probably put one back in her neck. The IV is out of her right hand too. So as soon as i hear from the doctor I will give a better update.
I checked on Jessica and she was doing good and then started throwing up. Please keep her in your prayers that she will get over this nasau feeling and be able to start feeling better really soon!
October 15, 2008
5:25pm.....Ok so Brooke is struggling to breathe, more so than what they want. Also the lung is looking a little better. However, there is a spot on the lung they are a little concerned about that may be pneumonia forming. Please send the prayers up and pray that her breathing and respiratory will get a lot better!!
3:27pm.....Got news that Jessica is doing a lot better than yesterday, hopefully each day she will get closer to her old self again! She is AMAZING!!
Brooke is doing ok on the vert, they are changing her O2 from slow flow to high flow because she is having some nasal flaring going on. She did sleep comfortably and her stats were really good. She wakes up and then they go crazy. They want her coughing the gook up she does a little right now they are suctioning her. She also had a major blow out on the nurse! Wew that was a mess! Atleast it is working!
Dr Fishbein came in this morning, he is the BEST!! Said things are looking good and said the pathology of her liver came back and it showed only cirrosis(? spelling), no tumors or anything else. He said her belly was all liver and it was really bad! Thank the Lord for Jessica and getting this done when we did!
She is not sucking her fingers yet, still chewing on her thumb she has another tooth in there! All and all she is doing pretty good! The doctors say she is doing great! :) Mommy standards good. I want more tubes out and her voice back and well those are my standards I guess we should be going by the doctors! :) Bo, Nanna and the kids made it up here and she is smiling a lot at them. Dustin is reading to her and Chelsie is playing with her toys, espcially the Elmo's phone! Got to Love her!!
Thanks for your prayers, please continue to pray she will continue to progress forward! She started with 9 lines in her and she now has 5!! Slowly but surely!
12:16......Vent is out and she is doing ok with it out. She is smiling and looking around and moving her little hands. She has a little nasal faring going on and her RR is in the 60's. They want them 30's to 40's. She is rubbing her thumb and first finger just like her pappaw does! She hasn't gottten those two fingers in her mouth yet, her thumb though! I am thinking her mouth is sore and needs a break.She is resting now with her daddy by her side. Please pray that she will do good and these numbers will become normal for her. Ok picture time let me go post some for pictures with the vent off!
8:44am.....I got a shower last night!! I had to get the nurse manager to help me but I got it! He has been awesome from day one when we were trying to see Brooke after surgery but they were working on her so long. He had them stop so we could see her and then we went back out and they finished what they had to do. He is very nice!
Looks like the talk on PICU is Brooke and the vent coming out! WOOHOO. Please just pray that she will do good and it remains out! The nurse was changing her diaper and I think she was hurting her , she was crying through her vent! I did not like that! It was so sad to see her crying but no sound!
There is another attending doctor that is up here and she is GREAT! She is not on today but wanted to come by and see Miss Brooke and see how she was doing! Like I said everyone is so nice up here! It is amazing! I know why it was meant for me to have all this done at Georgetown, it truly was the perfect place to be! God knows BEST!
Once the vent is off, I will try to get pictures, I know her throat is going to be sore so I am not sure what I will be able to capture! Thanks for all your prayers and support. The guestbook is what keeps me going and in touch with everyone on the outside so thank you very much for them!
October 14, 2008
5:43pm......Ok I was over there talking to my baby girl and she smiled through the vent! I posted a video and picture to share. I was SO happy! It was priceless! I can not wait to see it without the vent though!!
12:35pm.....Vent will come out tomorrow. She is doing really good but they have to ween her off the peep which is at 8 and needs to be 5. So ever 4 hours it will go down! YEAH! They say she is very fiesty! I wonder where she gets that from! :) The nurse is here now one of her arterial lines is coming out of her leg. Not the one that caused it to swell but the other so that was good! Slowly but surely she will be line free! Thanks for all the prayers!
2:38am.....The doctors are rounding now, they said they would let me know in 30 minutes if they are going to pull her off the vent. I will keep you posted! Prayers that whatever is best for Brooke will happen!
On a lighter note....I have been trying all morning to get a shower. We have our own private room but we share a shower with the people next door. So when you go in to take a shower you lock their side so they can't walk in. Well they locked my side and I cant but there is noone in there taking a shower, atleast I don't think so since it has been locked since 7:00am when I tried to get my shower! So then I turned to come back out and the lock to the bathroom is broke and I can not get out! I was turning and turning I know I worked on it for a good 5 minutes till finally it clicked and I was able to get out! So now I can't lock my bathroom door! I told the nurse at 11 that I needed to get in to take a shower and it was locked. She said they were probably in there next door. I said all morning! So if someone does not get this fixed by the time they finish rounding I will tell them once again to get that fixed for me or they are not going to want to be around me!
10:40am....Looks like Jes is doing a whole lot better than yesterday. They even mentioned the word HOME! YEAH She may be going home today. Just what we have been waiting to hear! Please give her some time when she gets home. She is still in some pain and needs to heal and needs some rest! She has not been resting good in the ICU. They make way too much noise on that floor!
I am still waiting to hear how the x-ray looked. Also waiting on the doctors to make rounds on Brooke. I will let you know when they do! Thanks for your prayers, Jes truly looks a lot better than yesterday! God is good!
6:55am...Updating this site atleast helps me keep track what day it is! :) I spent the night here at the hospital for the first time last night and believe it or not I got some sleep. The door had to stay open because of the vent (this thing causes me all kinds of problems :) but they were very quiet at the nurse's station. They are truly awesome up here in PICU! All of her nurses have been the BEST! She has not had a bad personal nurse, they are all very sweet and compassionate and wonderful!
I just looked at Brooke's vent and WOW....Her O2 is down from 50 to 30 and her breathing is down to 5! Her Peep is still at 8 and has to come down to 5 before they can pull the vent but that depends on her chest x-ray. They did one at 8pm last night and will do another one at 8am today. When the nurse comes in I will ask what the one last night looked like. Her TPN is causing her blood sugar to be up so even though it has insulin in it they are giving her a small dose too through her IV. Nurse came in x-ray still the same so please pray this lung will get better by the next one at 8:00am.
I also just heard from Bo and he said he was glad I got some sleep because he didn't. Dustin was upset about Brooke and cried himself to sleep. Says he misses her! Please keep him in your prayers. Chelsie is doing good emotionaly, school hahaha. She always has an excuse! She has a big project due Friday and I hate the fact that I am not there to help her with it. It is a booktalk.....remember in 4th grade how those went!! OH boy! Should be fun. Bo is there to help.....
October 13, 2008
Jessica is still sick. They are giving her some pain meds and some nausau meds so not sure if that is making her sick or what. She still is only eating a little bit of solid food. Please continue to pray for Jes that she can get over this hump and be able to go home soon.
Brooke is doing ok. I just had to get a nurse to come in she was waking up and then was not happy. Her chest by her shoulder I felt was very rough and rattling. So the RT came in and did some treatment on her and that helped then the charge nurse came and gave her those meds and out she went. They are trying to wean her off the vent what was 20 went to 25 then 20 and now 15. Her peep is 8. They explained to me that this number helps keep her lung open when she breathes so it can try to open back up. To come off the vent, she needs to be on 5 for the resp rate and the peep down to I think they said 4 or 5. Don't quote me just going by what I am thinking from what I heard. Otherwise, I think she is doing pretty good.
Check out the video clip.....I was also able to post a little clip of Brooke awake, she was a little too figgity so I was trying to calm her but wanted to get a little clip before they got the medicine in her. I got it but they came in and knocked her out again.

Special Prayer Request!
Please keep Emeson White, Eme, in your prayers! I will post the link to her site so you can read what is going on. Eme and her family needs lots of prayers right now. She is a part of my liver family support group and we all know prayers work! So please pray for this family.
The link is http://www.cotaforemersonw.com/node/35
And here is a picture of the little angel.
Also, many of you know I have been telling you about Xander! He is such a cutie and is in need of a liver transplant. His blogsite is.... http://colbykids.blogspot.com/. Please also keep him in your prayers! He is at Johns Hopkins just a little north from where we are with Brooke!
Isn't he the cutest little guy!!!!

October 13, 2008
The doctors just made rounds. It looks like her lung is still collapsed and so they are going to elevate that side of her and see what happens. On the vent they increased her peep from 6 to 8 and down on her rate from 25 to 20. I was quite concerned about this. I stpped outside to call Bo and let him know what was going on and Dr. Fishbein, the surgeon, walked by and said she was doing good and asked what I thought. I told him I was concerned with the vent. He said, we need to get her off the vent, out of PICU, and over to transplant. He said the doctors over here are more slow moving so let's see what happens. I am not liking the fact she is still on this vent. Otherwise her labs look good they are all coming down. She opens her eyes but she is a lot calmer when she is awake now. I will keep you informed what the surgeon does and any changes. Please keep her in your prayers and let's pray this vent comes out really soon!!
October 12, 2008
5:09pm... They took Brooke's foley out. One less tube! She is on a med that sedates her more than before. Once they wean her off some more meds then she should be more awake but a lot calmer than before when she would wake up. Jessica is a little sick, personally I think it was that game! I will be going to check on her shortly. Bo and Jeremy took the kids home to get them ready for school tomorrow. Julie and I are up here still. A whole lot quieter! A little too quiet for my likings. Well nothing really new to report, I will let you know if things change.
12:22pm...Ok we are all down at the waiting area on Jessica's floor all gathered around the tv getting ready to watch the Redskins crush the Rams!! GO SKINS...Jessica is out here with us of course cheering on Cooley to get a touchdown for her!
She got to come up to Brooke's room too and visit! Brooke opened her eyes and looked right at Jessica, it was beautiful! She knew her HERO was there and had to say thank you! :)
Jessica is doing good, she does not like phenagren(? Spelling) when they give her zofran that works better. She might get to go home tomorrow!
Brooke is doing good. Although, she has a part of her right lobe of her lung that has collapsed. They said that it is usually normal when on a vent. So her vent will not come out until maybe Tuesday. They are going to start TPN today. This will give her some nutrients and lipids that she is missing out of since she is not eating. She wakes up alot and opens her eyes and looks for everyone. She gets excited, her blood pressure goes up, and then they have to give her a bolus and knock her back out! She is sooooo precious! I have an awesome picture of the whites of her eyes where she was looking at us this am so check it out!
OK let me go visit and watch the skins! Thanks to you all and your prayers
October 11, 2008
8:04pm...Sorry for not updating as much but know, no news is good news. It seems like both Jessica and Brooke are doing good so there really is no news to report! Brooke just woke up and both of her eyes were open and she got to see Bo, Chelsie, Dustin and myself...and Jeremy was in there too! She got really restless and started kicking her leg and moving around. ?The nurse was giving report to the new nurse and she had to come in and give her more pain meds and she went on back to sleep. Earlier they were concerned that her blood pressure was elevated well the pharmacy took a long time to get the meds up and in the meantime it finally dropped so they said they did not have to give it to her. Good news! Well for now all is going good all Brooke's labs are coming down and when I say Brooke is pink she is PINK!!! Her eyes are white. She was cute before but you know she is really cute now!! :)
1:31...I know a long tome since I updated. I am sorry, waiting for doctors to make rounds and visit with Jessica.
Jessica is doing great! She is off the pain drip and is taking pain meds orally! Julie and I were able to help get her hair washed and she was reading all the beautiful comments on Brooke's website, so thank you all for leaving them! She ate breakfast this morning she is on a liquid diet and she was just now getting ready to eat her lunch!
Brooke had a great night and having a great day. They are weening her off the vent. They said if she continues to do good it will come out Monday. Her labs are all coming down!!! YEAH!! They are going to give her some more lasix to help get the fluid off her. She is still quite puffy! Chelsie, Danielle and I were in there and she cracked open her little eye and she saw us and started squirming and kicking her feet and arms. I went to get the nurse because I was not sure if she was suppose to be doing that so she went to go get some more medicine to calm her down....I had a talk with her and told her to calm down so she didnt have to get more....the nurse came back and she said she would just keep it in her pocket and watch her. Then she saw Chelsie and she was talking to her and again got all worked up but we calmed her back down before the nurse saw! :) Her eyes we got to see were white for the very first time in her life!! She is also turning so pink!! I am so happy and thank the good Lord above both Jessica and Brooke are doing so well! They even said to cut down Brooke's labs to Q8hours instead of 4! WOO HOO.
So both are doing really good. Jessica is still in ICU but again only because there are no other beds available. I have new pictures I will post too. I have a really cute one of Brooke holding Danielle's finger and she actually was squeezing it!
6:28 am I am thinking PINK!!!
We will be heading back over to the hospital in an hour. They said right now while she is sedated so heavy we need to be getting our rest. So when she comes to we will be able to have the energy to take care of her! So that is why we are here. I will try today to keep everyone updated on her and Jessica's progress, you know how this crazy site works over there...Not Good! But I will try! Thank you so much for signing the guestbook, your comments are so beautiful and appreciated! I have been sharing them with Jessica's family and hopefully soon she will be up to reading them herself. Your love and support through this is amazing and we thank all of you!
My daily devotional with God..had to share!
6:03am I just read one of my daily devotions from Crosswalk: Girlfriends of God and it so touched by heart and had to share...
When bad things happen in our lives, we tend to ask why. There are many purposes for the pain in our past. Our understanding of God's character is broadened, our faith is strengthened, our character is matured, our souls are purified, our vision is clarified, our passions are enflamed, and our hearts are softened. Of course with each of those positive qualities, a negative one could occur. For example, our understanding of God could be skewed, our character compromised, our souls sullied, our vision clouded, our passions extinguished, our hearts hardened. Just as the sun hardens clay and softens wax, we have the choice. We can't change our past, but we can determine the effect it will have on our future to make us bitter or better.
This is so true! I can not believe how much my life has changed in the last couple of months. When this all started I was not who I am today. Her first surgery was rough! I had a hard time, I kept asking why me? It took me awhile but God opened my eyes and I realized why not me. God is not fair but as our guest preacher a couple of weeks said I am so glad he is not! This journey I am taking has brought me so close to God and changed my heart! He definetly changed my life and that is why we have these "hiccups" in our lives. So don't blame God, Thank Him I know I have! So I will tell you, I have so much peace right now. I know God is beside me every step of this path and I feel His presence. I have given Him all my faith and trust and this is His plan for my life! My prayer as was in my devotional....
Dear Heavenly Father, Thank You for the trials in my life that have drawn me closer to You. Thank You for the purifying process of fire that brings the dross of my soul to the surface to be skimmed away. Help me to see the trials of my life through Your eyes. Thank You for the hard times that have made me who I am today.In Jesus' Name,Amen
God is a loving God and there is no way I could get through this without Him! Again, I am so glad He is my Personal Lord and Saviour! Without Him I am nothing!
UPDATES..... 10/10/08
8:27pm MAJOR ANNOUNCEMENT!!! I almost forgot to tell you guys...My mom was in the room and the nurse pulled back her eyelids and guess what they are white!!!!! Her body is also slowly turning pink! Praise the Lord! I have so been waiting to see this. I have not seen the eyes but the body is slowly turning pink!!
7:11pm Again sorry for not updating sooner, this site does not want to work between the hours of 3 to 6:30 for whatever reason up here!!
Jessica is still really sore they had her in a chair for a couple of hours. They took out her central line and foley! She is progressing really well.
Brooke wants to fight everything so they inceased her sedation medicine and they said she would be like that for awhile. Her kidneys are working great and her urine is regular color! Her swelling is coming down, her leg has come down 1 cm and her belly 2cm!! YEAH, funny what things you get excited about when you are in a situation like this! Her central line will come out tomorrow they were going to today but said to wait for the am. Her liver functions at 3pm were some elevated and some down, Dr. Matsumoto said that they were at their peak and would start to gradually come down. So he eased my worries. He is one awesome doctor. Dr. Fishbein too! He talked to us this am and is amazing and left me feeling quite confident about everything. I put everything in God's hands and I know that he is doing His work! This is all His work, he just uses people to show His work! Since they gave Brooke the lasix, her potassium has dropped and they will be giving her some more shortly! So I think that is all for now I will try to update as much as possible tomorrow if this site will work! Bear with me!
Please continue to pray for both Jessica and Brooke. We still need lots of prayers!
Sorry this is taking a long time to update the site is not working up here so I got a friend from work to do it. Jessica is doing really good! She is in some pain but they increased her drip so she can get more in the 8 minutes. She said she does not know how Brooke tolerated the NG tube she said that is really bad. They just took it out though! She couldn't see when we went in to see her this am. I put her contacts in for her and now she can see! So that was good for her. Her central line will come out today too! So like I said Jes is doing really good!
Brooke had a rough night. They thought they were going to take her back to the OR but Dr. Fishbein said he didn't think so and her labs are stable. They stopped the Hebron. They had to give her some medicine last night. She wasn't swollen and they said that was not good. This medicine worked because she is quite swollen and she keeps going to scratch her eyes. She also tries to suck those two fingers but theygive her some more medicine and that helps her to stay still! Dr. Fishbein said she was doing good though. Her liver labs were not what they would like to see at first but they would check again this afternoon and see what they second day labs look like. And actually Bo just told me they are drawing those now! I will go for now I am going to try to get some pictures of her up in a little while. I hope my friend from work will be able to post since this computer or site stinks!! Thanks for the prayers and we still need more!! God is in control and His work is being done.
Ok so that worked, let me try to upload Brooke's pictures how she looks....K remember she is swollen and has lots of tubes! She is doing good. My sister and mom just went in and was singing to her and she started swinging her hands and arms the machines went off, so the nurse had to give her some more meds to relax her. OOPS
October 10, 2008
8:03am We got a call last night at about 12:15 and they said that they were stopping the Hebron because her stomach is enlarged and they are not sure if she has some internal bleeding. They were going to stop that and then see what happens. They might have to take her back to the OR. We are headed back over there now to see Brooke and Jessica and see what kind of night they both had. I will update everyone as soon as I know how they are both doing!
October 9, 2008
8:02pm Jessica was a little nausau but seems to be doing really well. Again thank you all for your prayers and support! It is amazing how Jessica was a perfect match and not even blood related! I know who's hands were in that! God is So Good!
6:36We got to see our baby girl!! Wow!!! She is doing great! They still have not fixed her central line and will be doing that shortly. She is actually breathing over the vent so they are certain that will come out sometime tomorrow. All her vitals are stable and look great. She is running a slight fever but that is normal they said and they do not worry about that unless it continues for a couple of days. She looks great even though she has tubes EVERYWHERE! Thanks for your prayers. Bo and I will be going to see Jessica in just a minute I will have an update shortly. Thanks again for all your support and prayers!!
6:19 We still have not seen Brooke! Looks like her central line they put in is not working and they are trying to get it back in. This is a very sterile procedure so they won't let us in.
Jessica is awake and talking, says she is thirsty! She is doing really good. Justin and Danielle went to see her now. She actually did end up going into ICU, but only because this was the only room available. Again she is doing great!
OK I will update as I have information. I am not sure what happened to all my updates throughout the day. My apologies.
3:08 My apologies something has been going on with this site! Everything went excellent. Jessica is in recovery and doing fabulous! She is recovering well and does not have to go to ICU she gets to go to her own room. Dr. Fishbein just came in and said Brooke was a solid rock and did great! Her new liver is in and is closed up. Bile is already starting to produce and he projects both Jessica and Brooke to progress really well as expected. EVERYTHIG WAS PERFECT!!!! He kept stating that the liver was perfect for her. Thanks Jessica!!!!
Thank you for all your prayers, GOD IS GOOD!!! Thank you Thank you Thank you! I am so glad God was with Jessica and Brooke today. He was in control and had this all planned!!! HOW WONDERFUL!!!
As I go visit Jessica and Brooke I will update again. Please accept my apologies for the site crashing. We love you all and thanks for your support
10:40am Dr. Fishbein came in to the waiting lounge. I hadn't met him until now. Very nice. He said that Jessica has a small incision and the piece of liver that he will be giving Brooke looks beautiful! They haven't removed it yet but she is open and getting ready to take it out. He said Jessica is doing great! Brooke is just sleeping and they are putting in all the lines she will need. He said everything was going well and when he gets the liver in he will come talk to us and then go back to finish her up. I still have a lady Emily who is giving us updates every hour and a half to two hours.My brother Steve made it here with us too! :) Danielle is keeping me entertained watching Mrs. Swan and some silly kids videos! She is keeping me laughing.Thanks Danielle! You are a sweety!9:35am Jessica was actually taken back at 8:15 to make sure there were no surprises before they started on Brooke. So I guess when Brooke took her trip to the OR it was for real this time! :) There is a lady here who said she will give us updates every hour and half to two hours.9:06am Brooke is in the OR, Wow how hard that was! I was good until I had to hand her off! They said Jessica is doing good. Prayers, Prayers and more Prayers.:8:39am They are on their way up to get Brooke, please start sending those prayers up for both Jessica and Brooke as sugery should start shortly!8:09am The nurse just came in and said looks like it will be another hour. Jessica and Jeremy are in a holding area downstairs and Brooke is still in her room waiting. Pastor, Tony, Laurie, Paul, Sherri, Mom, and Patti are here with Bo & I and kids. Julie, Jeremy's mom, is downstairs with Justin and Danielle on the second floor where we will be going once surgery starts. I will let you know when things start.4:15am Wow what a night!!! I got zero sleep so please if I ramble or dont make sense please understand I have been up since 5:00am yesterday morning!With that being said...we got up here at 5:00pm and they tried to start an IV...no success. So they stopped her feeds and only gave her pedialyte until 11:15. At that time they tried to start the IV again...no success. Brooke was very upset!! They tried to also cath her for a urine culture....no success! They gave her some medicine to calm her down some and they brought over a nurse from PICU who was able to get the IV in but at this point it had to go in her head. She has a little hat on though to cover it up (I will post a picture a little later). Oh did I mention this was around 2:00am!! Then because earlier they could not get her cathed for urine they came in around 3:00 and put her foley in! It was a very long and frustrating night! She is scheduled to be in the OR by 7:30, they are not sure if surgery starts at 7:30 or goes down at 7:30 I will keep you all informed.Oh the PICU nurse was AWESOME!! She even said I know who I am requesting tomorrow night for my patient! She said she has not had a fresh transplant as tiny and cute as Brooke for a long time and she needed that!FYI....Brooke has her first tooth and looks like the second could be coming any time!
October 8, 2008
We got news from Dr. Matsumoto that the ultrasound was ok and transplant was to go as planned. I did not know this could have changed things. Anyway, I am busy trying to get last minute things ready to leave tonight. I did want to leave a little information before the BIG DAY tomorrow.
I want to say thank you from the bottom of my heart! EVERYONE has been SO supportive and so loving, it is just amazing! I love you guys all of you. If you take the time to visit this site I know you care about my baby girl and my family! I truly thank you! I know you are all praying and please tomorrow at 8:00am please go to God in prayer and pray that Jessica and Brooke will be safe and all will go smoothly. This is truly in His hands and He is control. I have said this numerous times but I say it again....God is good and I am so glad I know Him personally and he is my Lord and Saviour. There is no way I could go through this journey without Him by my side!!! He will be with Jessica and Brooke tomorrow in the OR and he will be in control of the whole transplant! I truly believe that and know and feel His presence!
Thank you again! I can not thank everyone enough but know I truly do love you and know that you are there for me and my family and Jessica and her family. Thank you for supporting our softball tournament, golf tournamnet, collecting money, sending money, helping with my kids,sending cards and gifts, work....wow thank you girls you are one awesome bunch of ladies....docs you are awesome too and thank you for your support during these 7 months, Bo's work thank you, you guys have been so supportive and great to Bo and I from the day we were up at Johns Hopkins to now, thank you for the meals the phone calls the messages on Brooke'e website, my friends who have been there by my side through this journey you are what a TRUE friend is! My church family, thank you for being there and supporting my family thanks for praying for us faithfully! Chelsie and Dustin's friends & their families who have offered any support with them and helping out. The community around us thank you for all you have done and continue to do for us! Like I said it is just amazing the love, support, everyone just wanting to do whatever they can to help us! THANK YOU!!
What I ask now is to pray and we just put it all in
God's hands and let Him do His work!
October 6, 2008 cont.
Georgetown called and Brooke has to be there at 8:00am tomorrow for her ultrasound. She does not have an appointment just going to fit her in when they have a spot. Could be a very long day!
October 6, 2008
For those who were wondering who is giving Brooke the gift of life, here is a picture of Jessica and Brooke.
Surgery is scheduled for 8:00 on Thursday. Brooke will be admitted on Wednesday and Jessica has to be there at 6:00am Thursday morning. They said the surgery usually takes about 6 hours. I will keep this site updated through out Thursday as I get information from the staff. I know there are a lot of people out there praying for both Jessica and Brooke and know we appreciate you ALL! God will be with us and is in control! God is Good All The Time!
October 2, 2008
I apologize for not updating, as the site was down. Jessica had her test on Tuesday and everything went well and transplant is definetly on for Thursday. Jessica was sore afterwards and then yesterday but no complications. The transplant surgeon came to see us when Jessica was in recovery. He went over everything and gave us a lot of information. The only thing is with Brooke. They are concerned why her spleen is not enlarged. When you have this condition and your liver fails the spleen usually enlarges because everything backs up into it. This is not happening in Brooke's case. He said we might have to have an ultrasound and check to see if the veins that flow to the spleen are going directly to it. If they are not they are going to have to go in and close them off before transplant. Or they said maybe the day of transplant. I will call her transplant coordinator this morning and ask when this might be done. Please continue to pray for Jessica and Brooke. This is an amazing and beautiful thing that Jessica is doing and we are so greatful to her!
Also please visit Brooke's softball tournament link to the side to check out information on the benefit that our friends, Freddie and Diane Jobe, have organized for our family! Thank you very much guys for putting this together for us! We appreciate all your hard work, concern and love for Brooke. Thank You! Thank you!
September 29, 2008
Just wanted to put the word out that we need GOLFERS!! The First Annual Brooke Wallace Golf Classic will be October 24th at 9:00am. There is a link here on her site with more information. I know we will probably be in the hospital that day with Brooke but Bo will be there and lots of family and friends. If you golf or know those who like to golf please sign up and participate in this event for Brooke. If you are a single golfer and do not have a team that is fine as we will place you with other single golfers! So again, please register and get the word out that we need golfers! If you have questions or need more information, you can contact Bo at 540-661-6755. Thank you again for all your support.
Also with that said, there will be a raffle for a set of Ping golf clubs. If you would like to purchase tickets for this raffle, they are $5.00 a ticket and again you can email me at jwallaceent@verizon.net or call Bo at 540-661-6755. Thank you.

September 26, 2008

Breaking News!!
Jessica is a total match and transplant surgery is scheduled for October 9th!! Words can not express the feelings we feel right now! This will be Bo's 36th birthday and he said last night Jessica could not give him a better birthday present! What an amazing and emotional day! Thank you all for your prayers.
We still have some appointments on Tuesday, Jessica has a test and Brooke has her follow up appointment. So another day at Georgetown!
Please keep us in your prayers as the transplant surgery day comes closer and please thank our Heavenly Father above for Jessica being a match!

September 24, 2008
Charlotte, the donor transplant coordinator, called a little while ago and said all of Jessica's testing was complete and they will go before the committee Monday or Tuesday to see if it is a go or not. I will say again and can not say enough, please pray if this be God's will all will work out. This has been an emotional rollercoaster but I know this is just how this process works and I have to lean on God for strength and guidance. He is with me every step of the way and I know that!
All of you have been so supportive and there for my family and I am greatly appreciative. Thanks to my mom, Sherri, Tony, Stacey, Jessica and Pastor Daniel for being up there with us at Georgetown waiting to see if the transplant was going to be a go or not both days! Thanks to Jeremy and my dad who made sure the kids got to school and home and fed and homework done each night. Thanks to our families who made sure things at home would be taken care of while we were away and called to make sure and see if we needed anything. Thanks to mine and Bo's work who have been VERY supportive and understanding through this whole journey. Thanks to our many friends and family who have helped with getting the golf tournament ready. Thanks to our many friends and family who have commented on our guestbook and text us to let us know you are there for us and are thinking and praying for us! Thanks to my liver families support group who have been nothing but supportive and left many encouraging words and know the perfect liver will come when God is ready! Thanks to Chelsie and Dustin's school teachers, principals, counselors, friends and their families who are encouraging them and helping them with their emotions. Thanks for not forgetting they are on this journey with us too. Thanks to my church family who call and check and continue to pray that God's will will be done. Thanks to the many churches in Virginia as well as out of state that are staying up to date with Brooke and continuing to pray for her. Thank you for the prayer cards letting me know you are parying, very encouraging! Thanks to all who have donated to assist with the overwelming amount of bills that are coming in and will be coming in. We are truly greatful! There are SO many of you and I could go on forever with each and everyone of you who have called, texted, commented, emailed, etc. that I would be here all night thanking you so please know your thoughtfulness, love, generosity, support and prayers are not unnoticed and we greatly appreciate ALL you have done and continue to do for our family!
We love you all and thank you all for everything! THANK YOU THANK YOU THANK YOU! There are No words to express what we feel but know we are very appreciative of each and every one of you.
September 23,2008
Today, Jessica finished all of her living donor testing and did well. However, we have been informed the liver that was spoke of last night is available. The tentative time for the transplant will be midnight. We are all ecstatic about this news, including Brooke who is now talking up a storm to her daddy.
As possible I will keep you abreast to any new and/or changing details.
We are so appreciative of everyones love and support. Please continue to keep us in your thoughts and prayers.
***************The nurse just came in and said that it looks like 1:00am will be surgery. The doctor has left to go pick up the liver. He was leaving between 9 and 10pm. It still is not definate it is a go, we just pray and wait. Please also keep the donor family in your prayers. As this is a blessing to us, this family has lost a loved one. My thoughts and prayers are with them.
**************So the liver was too big for Brooke. We are headed home and we wait. God is in control, we wait for His plan and His time!! Thank you all for your prayers.
September 22, 2008
Well we are here in the PICU at Georgetown. The first liver they thought they were going to use was a no go. They just told us that there is another liver available but we will not have conclusive information concerning this liver until noonish tomorrow. Jessica will still resume testing tomorrow am. Please continue to pray that if this be God's will all will work out.
Now that I have my laptop I will definetly keep you abreast of any changing and updated news.
Thank you for all the phone calls and text messages! I appreciate all your love and support!
September 20, 2008
Jessica and I will be going to Georgetown Monday and Tuesday for testing to see if Jessica can be the living donor. Please keep us in your prayers!! Brooke also has an appointmnet Tuesday. She will probably be getting vitamin K shots now twice a week. I will have to give these injections.
Brooke had a rough day yesterday not herself but this am she is back to her smiling happy self! I think she was just worn out from everything. Thanks for the prayers while she was in PICU. God definetly answered them and took care of my baby girl!
September 19, 2008
Well we are home! Brooke was in PICU on Wednesday and we were able to come home yesterday. Her labs from Tuesday were off. Her INR was unreadable as they were too high to calculate all we know is it was above 12! They gave her fresh frozen plasma and when they retested, they said that her INR was 1!! Thank the Lord!
With her numbers as high as they were she was listed on the transplant list and she is very high up on the list. They even commented, do not be surprised if a liver comes available this weekend that we will get a phone call.
She is such a trooper. She has a lot of spunk and the sweetest little Angel!
I do want to say Jessica, my sister-n-law and dear friend, has contacted Georgetown and is going to be tested. With things going the way they are it has to be quick and they said we could do all her testing in one day! So her and I are on stand by waiting to hear something! Please pray, if this be God's will, all will work out and Brooke will have her new liver soon!
Jessica, as I told you earlier, there are NO words to express the gratitude and heartfelt feelings I have right now! We have been friends for a LONG time, thick and thin, but you are always there and there now doing this for our family! You are truly a blessing and have always been a blessing to my family. I pray this will work and you and Brooke will grow up with an awesome relationship and she will know how much her AUNTIE loved her and how much she gave to give her life! Thanks Jess, you truly are a special friend and sister to me!
So we wait and see what unfolds! Please just pray! That is all we can do right now. Patience and Love!
September 17, 2008
Quick update...
Brooke's transplant coordinator called and stated that Brooke's PT and INR are critically high and we need to retake them. She said the doctor feels that it is a false result because seeing her yesterday, she did not seem like she was critical. Please pray that all is OK because if this is the case it is something to worry about and she will not be able to be listed on Thursday. My friend from work MeMe is going with me. It is SO nice to have such special friends in my life that will drop everything to go and give me support! I am truly greatful.
Also Bo's brother Jesse is A+ and contacted us to say he will be tested!!!! There are NO words to express my thankfulness for his generosity!! Jesse , please know we are very thankful that you are going to be tested to give Brooke the gift of life! You are an amazing brother whom Bo and I love and are truly greatful for you doing this!! There are no words to express our heartfelt feelings but know we are truly blessed to have you a part of our life!!
Please keep praying that if this be God's will all will go forward and Brooke will have her new liver soon!
September 17, 2008
Well.......we did not get the news we were hoping for yesterday. It was a very long day and emotional day. The surgeon said the piece of the liver that I would have to give to Brooke will not work. I have a very rare anatomy of the liver. The piece is suppose to only have one vein and mine has two. So I am not able to be a living donor. So we were like ok lets do Bo. He is a blood match too. Well not a go either. He has something called hemochromatosis. We knew he had something with his iron because both Chelsie and Dustin inherited it but didn't realize it would stop him from giving part of his liver.
So we are back at square one. I am not giving up. God is in control and this is His plan and I have to put my faith and trust in Him. The trasnplant cordinator said she was going to talk with the surgeon we MAY have an option where I can give the bigger part of my liver to another child in need of a transplant and their donor give the little part of their liver to Brooke. This is something that Georgetown does but I have not heard anything yet and if this is an option. Otherwise, any family member that would like to be tested has to not be overweight, a non-smoker, between the ages of 18 and 55, and have A+ blood.
The other option is we wait for cadaver liver which her doctors are only using as their last option. She will be listed hopefully on Thursday they said as all of her testing is finished. Her PELD score is 25.
Like I said, I am putting my faith and trust in the Lord and know that he is in control and the best decision maker in Brooke's case. He knows what we do not see ahead. God is good! Please pray that His will be done in this situation!
September 15, 2008
My apologies for not getting Brooke's update on before now. We had a very busy weekend.
Brooke's appointment went great on Friday with the Cardiologist. He said she was 99% healthy with her heart. The one percent was, she has a tiny hole in her heart that most babies have and that close up by the time they are between the ages of 6 months to a year. He said Brooke's is probably taking a little longer than usual due to her condition. Otherwise all was very well.
OHHHH!! Brooke weighs....13 pounds 5 ounces and is 26 inches long! She gained ounces in one week!!! She is doing so good and getting some cute fat rolls finally!! Check out her Redskin party pictures and one of her pictures shows her and her little double chin!!!
Thank you again for the many prayers and I will have another update after tomorrows appointment with all the MANY doctors we have to see! It will be a very long day!
September 11, 2008
I spoke with Charlotte Nicholson at Georgetown yesterday and received my schedule for the appointments with the doctors I have to see.
I will go up with Brooke on Tuesday, September 16th.
I have to be at Georgetown at 9:00am for the appointment with my surgeon, Dr. Matsumoto.
10:00am I have an appointment with Dr. J Plotkin, the Anesthesiologist.
10:30am I have an appointment with Dr. Laurin, the Hepatologist.
11:30am I have an appointment with Tamara Ellis, Social Worker
At 1:00pm Brooke will have her appointment with her team.
2:00pm I have a medical consult with Dr. Chris (this appointment is 2.5 miles from the hospital so I will have to leave Bo with Brooke, go to this appointment and then come back.
A very busy day, to say the least ,but atleast we can do it in one day instead of 6!! Thank goodness, my friend Stacey, is going to go with us to sit in for me at Brooke's appointment with Bo since I will not be there the whole time. Bo means well and listens but when all is said and done he looks at me and says what did they say! It is always good to have 2 set of ears who can tell me everything and ask my questions for me!
Please keep us in your prayers, we go to Georgetown tomorrow for her heart appointment. We were suppose to go to Johns Hopkins today, but they had to reschedule for tomorrow. I told them I already had an appointment with Georgetown and they would have to pick another day. No news on that appointment yet.
September 5, 2008
Brooke was a real trooper today for her sedated MRI! She was awesome. I found out she really likes Pedialyte. She drank 4 ouces on the way up and then when she was done and hooked up to her formula she still took more pedialyte. So now we go back next Friday for her echocardiogram and consult with the cardiologist and then the 16th for her appointment with the doctors. Still no news about my doctor appointment.
Also, please keep Brooke's pappaw (Jen's dad) in your prayers he is in the hospital with chest pains.
Thank you for your prayers today.
September 4, 2008
Georgetown called me yesterday and said that the results of my MRI were great and for me to proceed with further testing. My next step will be to have a clinic appointment and meet with the hepatologist, surgeon, anesthesiologist, social worker, and medical internist. I think that was all of them?!?! I have to be there around 8:30 and they said to plan on being there all morning! Atleast I can see them all in one day and not one here and there! They are going to look at Brooke's appointments and try to get an appointment when I am already up there with her.
Please keep Brooke in your prayers as we take her to Georgetown tomorrow for her MRI. They will have to sedate her for the test.
August 30, 2008
We went to Georgetown yesterday and Brooke had her ultrasound. The radiologist came in and stated everything looked the way it was suppose to look and that was good.She also had her second round of labwork.
I went and had my chest x-ray, EKG and MRI. All was fine, but when I had to have the MRI, OH MY! I have never had one before so didn't know what to expect. I am cholosterphobic so it was quite an experience! I made sure I kept my eyes closed and prayed that God would help me get through this and make it quick as possible. He did! I never doubted it but I truly felt Him and knew he was there with me and at the end the tech said I did beautifully!
When I was going to the MRI machine, the tech said so you are the match, I said I hope so. He stated that the bloodwork is what is the match, the other testing that follows is mainly just checking to make sure I am healthy and nothing is wrong with me to be able to give part of my liver to her. The MRI he says looks to make sure I have only two valves. He said there was one lady that had 3 and that eliminated her from being a donor. So I can not wait to meet with the doctors and find out if all is OK! I pray to God each and every day that His will be done.
It was cute, when I was going to get the MRI, the tech asked since Bo and I both were a match, how did we decide who was going to be worked up. Did we flip a coin, thumb wrestle, fight for it? I said no, I just said to Bo if it was OK with him, I really wanted to be tested first and I felt this is something I have to do. I know what Brooke has is a medical mystery and there is no cause for what she has. But, as a mother, you have this feeling and sense did I do something wrong? You just want to help your baby and make her healthy again. Not that Bo doesn't but If I can have a second chance to give her life again by giving her part of my liver by all means that is what I have to do! I just have to do this and I truly thank Bo for allowing me to go first.
I am so thankful God gave her to me and I thank Him for giving us this opportunity to give Brooke a second chance at life, as he has given me the opportunity of a second chance of life in a different way! I was born a sinner on my way to die and go to hell. When God sent His son to die on the cross for my sins he gave me the opportunity for a second chance at life. John 3:16 states, For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life. I just had to believe and ask God to forgive me for my sins, come in my heart and save me and he became my personal Lord and Savior! He saved me from dieing and burning for eternity in Hell. He gave me a chance to have eternity in Heaven with Him.
As I have to put my faith and trust in Him, that His will be done in Brooke's life and the decisions we make, I had to put my faith in Him and believe that he indeed did die on the cross for my sins and rose again. Ephesians 2:8 states, For by grace are ye saved through faith; and that not of yourselves: it is the gift of God: Just like Brooke's situation, I pray I will be able to give her the gift of life by giving her a new liver, but, God has given us an even better gift of life; ETERNITY with Him if we only believe and trust in Him!
I pray if you have not taken the second chance of Life, God has given to us, that today you will call upon Him and ask Him to save you from Hell and become your personal Lord and Saviour!
There is NO way I could go down this journey he has put in my life without Him! I have given Him all my worries, all my heartaches and turned the whole situation over to Him! He is a loving God and he will take care of ALL things, I just have to trust in Him.
August 28, 2008
Brooke's blood type is A+!!!!!!!!!!!!!!!!!! The same as me!!!!!!!!!!!!!!! I have not heard what Bo's bloodtype is yet but atleast we know she is a match to me. Now witht that being done, I still have numerous other tests that have to be done to see if I can give part of my liver to her. So, please continue to pray!
Brooke's PELD score is 25, which is high. They said this will put her higher on the list but they have to finish her testing so she can be listed. Once she is listed then they can consider the living donor.
Tomorrow I have to take her back to Georgetown for an ultrasound and more bloodwork. Then on the 5th of September she will have a MRI and the 12th an echo cardiogram.
I am so thankful she has my bloodtype, I just pray that if it be God's will, I will make it through all the other testing and be able to give her a chance at life again! Please join me in praying that God's will be done and remember to thank Him too for all he has done thus far for Brooke and this news we got today, that she indeed has my bloodtype!!!!!!!!!
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Georgetown just called and stated that Bo and I both have A+ blood. We both can be tested if need be. I will go first and if I pass all of the tests I will be the donor. If for some reason something does not match then they always have Bo to test! I actually go tomorrow with Brooke and have a chest x-ray, EKG, and a MRI done. Once those results get back to the doctor they will then have an appointment for me to visit with them and go over all the results. PLEASE PRAY THAT ALL WILL GO WELL!!!! God is good and in control! I put my faith in Him and know he knows best!
August 27, 2008
Let me start by saying Georgetown was AMAZING!!! Everyone, and believe me I met tons of people yesterday, were the most professional, caring, sincere, compassionate group of people I think I have EVER met!
Brooke gained only 4 ounces since last week, but she was throwing up a lot on Sunday and then she was off the pump Monday due to pulling it out and my mom not feeling comfortable putting it in (we are working on this and she will have to do it for now on) :) She was only off an extra hour but I had her off in the middle of the night for a couple of hours when she started throwing up. So we have to go back to Georgetown next week, we will weigh her then and see how much she gains and go from there. We can still increase her calorie intake they said so not too much to be concerned about right now.
The surgeon was very nice and informative. He stated they like babies to weigh 10 kilos (22 pounds) idealy. However, they have done transplants on smaller babies. Brooke weighs 12 pounds 4 ounces. When he examined her, and he even made a point to the GI doctor, Brooke has a large belly now and he felt if he had to do the surgery now she would be fine because her belly is large enough for the transplant. The testing for the living donor can be done in three weeks or as soon as 48 hours if an emergency was to happen.
They did start bloodwork on Brooke, Bo and I, for the transplant. The bloodwork that was done for Bo and I, is going to test our bloodtype to see which one of us is a match to Brooke. They also did alot more study on the blood too though! BELIEVE me whoever is the match for Brooke will have a clean bill of health, they test for every disease known to man!!! I think they took 12 to 15 vials of blood from us! And this is just the beginning!
We should know something back today or tomorrow to see who is the match. Once that is decided, more testing will be done...ultrasound of liver, MRI of liver, sometimes a liver biopsy, echo, etc.
So the ball is rolling, I am very happy and comfortable with Georgetown! Please continue to pray that God's will be done. She is in good hands. Thank you all for your love, support and prayers! I say this alot, but know there is NO way we can make it without the support we have and we are truly greatful to have each of you in our lives!
August 21, 2008
Sorry I was not able to update yesterday very busy with Brooke's appointment and then my other two started back to school. Dustin started a new school, as Orange has K-2nd at one school and 3rd-5th at another. Chelsie also started middle school! Wow! Kids grow up so fast!
Well a BIG correction......I went to the pediatrician yesterday for Brooke's weekly weigh in and she weighed 12 pounds even. I was very upset and disappointed as she weighed 12 pounds 1 ounce Thursday night......so I thought! I paged her GI doctor, Dr. Schwarz and was questioning what is wrong. She was great and called me right back. She pulled up Brooke's hospital paperwork from last week to find she weighed 11 pounds 6 ounces Thursday night! OOPS!!! Somebody gave us some wrong infomation! So when I found she gained 10 ounces in 5 days I was back on cloud nine!! They want her to gain an ounce a day, with these numbers, she is gaining about 2 ounces a day. I could tell she was gaining, she is actually starting to get some fat on her thighs. I will try to post some pictures this week.
August 19, 2008
Brooke is doing really well. She is tolerating the tube quite well. When she sucks her two fingers, it is like she knows it is there and just moves her little pinky to the side not to touch the tube. She throws up probably twice a day but not a lot like I am use to her doing! When she is off the feeding tube for the four hours she is taking the bottle and eats 2 ounces at a time. This will keep her knowing how to use her muscles in her mouth and know it is used for eating. I give her yucky medicine through her tube so she doesn't have to taste it and it goes right in her stomach. This works really well. The others I still give through her mouth and she likes them and licks like she wants more! I called the pediatrician today for an appointment to have weekly weigh ins to see how much my little baby girl is weighing in these days, we go tomorrow at 10:45am!!
NEWS FROM GEORGETOWN................
My nurse transplant coordinator at Georgetown, Martha Kossiaras, called me today at lunch and we have our first appointment to go there Tuesday, August 26th. I am very excited and nervous if that makes sense. I am excited to get the ball rolling and at the same time nervous about the whole process. She said that looking at Brooke's labs they needed to get her in their quickly so that is why the appointment next week. They only do pre-transplant clinic visits on Tuesday afternoons and the other testing...echos and MRI of liver on Fridays. They also do TONS of bloodwork and may need several days for that. So, we will have our foot in the door after the Tuesday visit and will go from there. Please pray that God will keep Brooke strong through all this testing. Also, please pray that God will calm my nerves through all this and keep my spirits up and keep me strong on all these decisions we will making.
August 15, 2008
First I want to thank Jessica for keeping everyone up to date by posting to the website! For whatever reason I could post pictures at Johns Hopkins but not this page! Who knows!
Thank you very much for the many prayers, phone calls, text messages, emails, and love while we were at Hopkins. God took care of her and blessed her! She went in weighing 11lbs 4 ounces and last night right before bed she weighed a whopping 12lbs 1 ounce! Isn't it just wonderful that we have this option and can intervene this way.
August 14, 2008
It looks like we are going to be here until tomorrow. She is doing fairly well with the feedings. She threw up all over me last night at 9:00pm after I gave her 2 ounces by bottle at 8:30. She then did not get anything from the botlle until about 9:00am she took 1/2 ounce. She then threw up about 10:00am on Bo this time. So she is definetly not partial!! :) The doctors came in and said she needed vitamin E so we will be doing another vitamin along with vitamin D. Otherwise nothing else has been said or done. They are suppose to teach us how to remove and insert the feeding tube today. Our pump will hopefully be here by noon tomorrow. So if all goes well we should be home late tomorrow afternoon or early evening. Until the next update......
August 13, 2008
We are here at Johns Hopkins and the nurse has inserted the ng tube. They just started the formula running in and she is doing great! Tolerating everything well. Thank you for all your prayers today and please keep Bo and I in your prayers as we have to learn how to insert and remove the tube proabably tomorrow. Bo is already stressing but I am sure to make sure he knows how, so he will not have an excuse not to be able to babysit!! :) Thanks again for your love and support! We will probably come home either tomorrow or Friday.

August 12, 2008
We will be going back to Johns Hopkins tomorrow morning and Brooke will be admitted and a feeding tube placed. Please say a special prayer that all will go well and this will work and she will start to gain some weight! Also, please keep Bo and I in your prayers as we are going to have to insert the tube if it falls out and later when she does not have to be on it 24/7 we will have to take it out and back in. I am very nervous about this. Thank you again for all your love and prayers and caring so much for our "Little Angel".
August 8, 2008
Well we went to Johns Hopkins today and Brooke is going to have to have a feeding tube in sometime next week. She is gaining weight buy very slowly and if she is going to have to have the liver transplant they want her well nurished so she will be strong enough to go through the transplant. They are going to call us sometime next week and let us know and she will be there for about 3 days.
As for our appointment with Georgetown, I called this morning and they did get the records. So now when the doctors review the records they will then schedule the appointments and be in contact with us. I also asked Brooke's doctor at Johns Hopkins, Dr. Schwarz, if she could cc her visits to Georgetown so I do not have to go through that ordeal again to get them there!
Thank you all for the phone calls and prayers today and know God is in control, this is part of His plan! This is so she will be strong enough to withstand the transplant....so whatever it takes to make my little angel better is OK with me. God knows!

August 6, 2008
I spoke to Georgetown on Monday to see if they had received Brooke's records....No! Johns Hopkins assured me they would be overnighted to them and I faxed everything on Monday. So yesterday I got on the phone with Johns Hopkins and she said she could not find anything so I faxed it directly to this person's attention. She said since this was the 3rd time I was faxing it she would take over and do it personally. Yesterday afternoon I called her back and she said she was putting the records in the overnight envelope as we spoke and said it was going out right then and there! I pray Georgetown receives them today and someone will be calling me shortly!
Brooke is doing about the same we do have an appointment with Johns Hopkins Friday just for a follow-up...weight check, lab work, medicine dose change, etc., I will let you know how that goes over the weekend.
Also I am in contact with someone I met through the yahoo group I joined for people who have children or loved ones with biliary atresia. Her name is Ginger Johnson and her daughter is Faith Johnson. They will be going to Georgetown and Faith will have her living liver transplant tomorrow. Faith's mother will be giving part of her liver to her. Can I ask you to please keep this beautiful family in your prayers as they will be going through so much in the next couple of weeks, the same that our family will be going through in the near future!

July 28, 2008
Georgetown called me on Friday. They need all of Brooke's records before they will schedule our appointment. So this morning at 8:00am I called Johns Hopkins and requested her records. Of course, a consent has to be signed and faxed back and then they said they would overnight them. The physicians like to look at the records see where things are and see what their plan of care and next steps for Brooke are and then have an appointment for us and go from there. So hopefully by the end of this week early next week we will know more about an appointment and can get this ball rolling! I am so ready to get started so I can put this behind me and look back instead of anticipating the future.
Brooke is eating so much better, I think she is actually gaining some weight! :)

Thursday, November 18, 2010

Blessings

Tuesday, October 5, 2010

"Lil Princess"

Friday, October 1, 2010

UPDATE.....

October 1, 2010

Wednesday, September 29, 2010

September 29, 2010

New Life...New Site!

Brooke's journey through a liver transplant