Hi Ho Hi Ho it is off to Disney we go!

[jwallaceent]

My daughter Brooke was born with a rare liver disease called biliary atresia. There is currently no cause or cure. When she was 7 months old she underwent a liver transplant. My sister-n-law, Jessica, was a perfect match and saved Brooke's life!

Brooke rejected twice shortly after her transplant but it was mild and they caught it quick. With the treatment of steroids and adjusting medications, Brooke hasn't rejected since December 2008.

However, she does fight EBV. This is a disease that translant patients have to be monitored for because it can turn into lymphoma. Brooke's numbers fluctuate and her team is keeping a VERY close eye on her and these numbers!

Brooke's transplant facility recommended her for a wish. On Monday the interviewers came and talked with us. My three year old told them she wanted to swim with the Dophins at Sea World and see Hih Hoh...AKA Snow White!

They explained everything to us and said that we would more than likely stay at GKTW and of course visit the Disney parks. We are very excited as we have never been to Disney! Any information, suggestions and advice are GREATLY appreciated! Oh and another thing, my family has NEVER flown! AHHHHHHH We drove to Daytona Beach, Florida from Fredericksburg Virginia but this flying thing scares me to death....I told my husband that it is just another obstacle that Miss Brooke is helping us overcome in her short little three years of life thus far!!!

I posted pictures on the other thread but here are a few of my family....

Miss Brooke posing it up!

My three blessings!

My husband and I (14 years of marriage)

Thanks for checking in...looking forward to meeting you all!!

 

[jwallaceent]

First let me say this is a WONDERFUL site and gives so much information!

My name is Jennifer and have been married to my husband for 14 years. I actually was blessed to marry my best friend! My oldest daughter will be 14 in May. My son is 11. Then my third child who I call my surprise will be three in February!



My husband...my best friend!

Our Three Blessings!

Let me start by saying, we had a normal family life up until 2008. My husband and I both were working full time. Our kids were in school and we were just going down the road of life as "normal parents" would.



Our Family!

When I found out in 2007 I was pregnant I was shocked, happy, and then excited. She was born February 27, 2008. We never knew this day would change our lives forever! She was born with jaundice. Nobody was concerned. I mentioned it several times to her pediatrician but was told it was normal and they would keep watching it.



Brooke shortly after she was born...

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A long story short, when Brooke was 5 weeks old, I took her back to the pediatrician for her jaundice. The doctor said ok we will order a bili level. Another pediatrician walked by and said..”Oh NO, with her that jaundice we need to order this and this and this….” Thank God she walked by. She called me that night to tell me her liver functions tests were off and she was ordering an ultrasound the very next day.

We had the ultrasound and before I could get back into my car from the hospital, the pediatrician’s office was calling telling me to go to another hospital they were waiting on me to do a liver biopsy. We were admitted for two days. They told us on discharge that Brooke had biliary atresia. I couldn’t pronounce it more or less comprehend what they were telling me. They said I had to now drive to John Hopkins and talk with this team about a surgery that can buy Brooke some time but babies that have biliary atresia usually do not live past two! WHAT?!?!?!?!?



Brooke at INOVA when she got her liver biopsy and diagnosed with biliary atresia.

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I was devistated! My husband and I drove over 3 hours to John Hopkins. When we got there what I thought was an evaluation was actually a pre-operative visit. We were allowed to go home for the weekend but return on Monday for surgery. I was scared to death!

After Brooke’s surgery, the next step was to wait…wait to see if this surgery was working and would buy Brooke some time. After four months of waiting, it was determined the surgery was a failure and we needed to start the process of a transplant evaluation.



Brooke waiting to see if the Kasai was a success...

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We were at this point informed by our insurance company that we would not be able to have Brooke’s transplant at John Hopkins. We would have to go to Georgetown University. Another obstacle to the many we have hurdled in her short 6 months of life….but what an awesome amazing hospital facility and staff!!! Things happen for a reason; this facility is 2 hours closer and just amazing!



Brooke with her daddy and siblings days before her transplant.

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We started our transplant evaluation and my husband and I were tested to be a donor for Brooke. We were both denied. My sister-n-law contacted me immediately and asked to be tested. She went through the testing and was a perfect match! God sure was with us every step of the way. Brooke and Jessica (our sister-n-law) are not blood related and she was a perfect match! On October 9th, my husband’s birthday, Jessica saved my baby’s life!



Brooke and Jessica Pre-Transplant

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Brooke and Jessica Post-Transplant

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Brooke and Jessica this past Easter

http://i709.photobucket.com/albums/ww98/jwallaceent/Make%20A%20Wish%20Pre-Trip/brookeandjeseaster.jpg[IMG]

Jessica is doing great and Brooke is doing well. She rejected in November and December of 2008. She also fights EBV which in transplant patients can cause lymphoma. Her team is following this closely and watching and will intervene if need be.





Brooke shortyly after her transplant prior to her first rejection.

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Brooke with one of her amazing doctors and another transplant friend.

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Georgetown University recommended Brooke for the Make A Wish! She told them during our interview she wants to swim with the dolphins. I am not sure how well a three year old can swim with dolphins but they said they will let us know. She will be going to Disney and Sea World either sometime in April or May of this year. They also said we would be staying at Give Kids the World. My family is very excited and looks forward to this trip as we have never been! I do not know anything about Disney or Florida so any advice would be greatly appreciated!!


Brooke and her siblings have a beautiful realationship together! I love to watch them. Life is too precious and should never be taken for granted. Here are just a couple of those moments!

 

[blessedmom4]

You started your PTR!! YEA!!! I just saw you had posted on the Wish Trippers thread and wanted to let you know I was joining in the fun of your planning. I had to sign in before we head to our three MD appointments...Your family is beautiful!!!

 

[jwallaceent]

You started your PTR!! YEA!!! I just saw you had posted on the Wish Trippers thread and wanted to let you know I was joining in the fun of your planning. I had to sign in before we head to our three MD appointments...Your family is beautiful!!!

Thank you so very much!!! I wish you the best with your appointments today. We head to Georgetown on Thursday for Brooke's follow-up. This trip seems like it could be so overwelming but at the same time so much for for my family and exciting! I will take any and all help!!!!

 

[jwallaceent]

MAW called yesterday to tell us that Brooke is too little to swim with the dolphins. However, they were still putting the Disney trip together for us and that we would be staying at the GKTW. We can go either in March or May. Some people are telling us to wait until the fall. Any suggestions? I definetly said no to April!! (Spring Break)!

They did say we would go to SeaWorld one day and she "MIGHT" be able to touch and feed the dolphins! I hope this is true and she atleast gets that!

Smiles,

 

[blessedmom4]

MAW called yesterday to tell us that Brooke is too little to swim with the dolphins. However, they were still putting the Disney trip together for us and that we would be staying at the GKTW. We can go either in March or May. Some people are telling us to wait until the fall. Any suggestions? I definetly said no to April!! (Spring Break)!

They did say we would go to SeaWorld one day and she "MIGHT" be able to touch and feed the dolphins! I hope this is true and she atleast gets that!

Smiles,

FYI: most colleges will have Spring Break in March, although we HAVE been in March before and found a good touring plan helped...we were SUPPOSED to go on Lisa's MAW trip this May and my only concern was going to be the heat. As part of the GKTW package your family will receive 3 day Disney World tickets, 2 days Universal tickets and 1 day Sea World where they DO get a plate of food to feed the dolphins...I HTH and I will be praying for the upcoming appt. tomorrow, I know all too well the stress that can cause.

 

[lawblond7]

So glad you started a PTR. We leave Friday - hoping the snow here in Northern, VA does not get in the way -for GKTW and Disney.

We are staying at GKTW == ALL your kids will haver a wonderful and special time

 

[jwallaceent]

So glad you started a PTR. We leave Friday - hoping the snow here in Northern, VA does not get in the way -for GKTW and Disney.

We are staying at GKTW == ALL your kids will haver a wonderful and special time

Can't wait to hear your trip details! We are excited...I also hope this weather does not interfere! Have fun and I will be watching for details!

 

[jwallaceent]

We received confirmation that we are leaving March 23rd and returning March 29th. We do not have all details yet. We will be staying at GKTW. Our flight leaves Richmond, VA at 7:00am..YIKES! =) but we will be in Florida at 9:01am...still a full day Then our flight back is at 9:00pm we arrive back in Richmond at 11:00pm....again atleast we have another full day!

I am a morning person and I am sure the kids and hubby will be so excited they will be fine too!

Brooke is super excited wants to leave now and asks we leaving now? When her big sisters frets her she says better behave or you can't go see "Disanee" LOL

I think I am definetly going to make her a countdown calendar so she can keep track....

As I get more details I will definetly post...thanks for following.

 

[brookerene]

Yay for making a PTR for Brooke! I will definitely be following...

 

[Mom2Miracles]

So exciting that your daughter was granted a wish. We just found out recently that our daughter is a wish recipient as well. We are waiting on our package from our wish co-ordinator so we can fill it out and find out our dates. We are hoping for the end of April/Beg. of June (as long as our daughter is stable enough - fingers crossed). You have a beautiful family. I look forward to following your journey.

 

[blessedmom4]

Congratulations on getting dates, that is SOOOOO exciting!
You shoud definitely make a countdown calendar to add to the excitement
(and so you don't wear your voice out telling them how much longer before you leave )

 

[jwallaceent]

So exciting that your daughter was granted a wish. We just found out recently that our daughter is a wish recipient as well. We are waiting on our package from our wish co-ordinator so we can fill it out and find out our dates. We are hoping for the end of April/Beg. of June (as long as our daughter is stable enough - fingers crossed). You have a beautiful family. I look forward to following your journey.

Thank you very much! I will be following your PTR also! Will keep your daughter in my prayers and hope your wish comes soon and she remains stable!

 

[jwallaceent]

Congratulations on getting dates, that is SOOOOO exciting!
You shoud definitely make a countdown calendar to add to the excitement
(and so you don't wear your voice out telling them how much longer before you leave )

DEFINETLY!!! The calendar starts this weekend, I hope to have finsihed next week and post a picture!

 

[jwallaceent]

Yay for making a PTR for Brooke! I will definitely be following...

Thanks! This site is truly amazing the support is just wonderful! With three kids one 14 one 11 and the littlest 3, and never been to Disney. I was LOST!!! Still kind of am...but this site has really HELPED!!!! Still researching and following some PTR's but just the friendship and bond that we have with having a sick child is just the best thing I could ask for right now!

It is so nice when someone truly gets what we parents go through with a sick child so thank you ALL!!

 

[jwallaceent]

Just wanted to stop in and give a quick update on Brooke. She went last week for labs and her liver numbers looked really good. However, her Prograf level, anti-rejection medication, was really low. If low her body can reject her liver and put us in the hopsital immediatly. So although her liver numbers look good we have to repeat again tomorrow and hope her level is where they want it. We should be at every 3 to 6 months for labs. Brooke just recently went to monthly labs after being on them weekly. Now we are back to drawing every week. Our facility is an hour and a half away but I will not take her any other place! She loves her friend Lorna, lady who draws her blood, and she now sits in her chair by herself puts her arm out there and never cries! SHE IS AMAZING and never ceases to amaze me! Thanks for checking in and pray her labs look good and we can go back to our monthly lab draws!

 

[brookerene]

I hope they can get her levels correct. My son Kaleb is on prograf, he's waivered some but I think we have it set. He is still on weekly draws through May....that fear of rejection sure sits in the back of our minds all of the time.... Take care

 

[blessedmom4]

Praying for medication stability, I understand about taking Brooke to where she can receive the best care. I hope you will be back to monthly draws soon.

 

[Mom2mitokids]

Keeping Brooke in my thought and prayers.

 

[blessedmom4]

Hoping Brooke is feeling GREAT!