Make a Wish (and other organizations) ~ Wish Trippers UNITE! Volume FOUR!

[jj0plin]

I usually just use my facebook pictures (right click, copy image url, come here, click on the picture icon above and paste url). Flickr.com works really well too!

 

[imkksmom]

Hi there- we have been approved but no dates yet- can we get added to the list? Thanks so much!

It would be Kaila's trip

 

[imkksmom]

I hope this goes through. I have no idea how to post pictures. I wanted to post pics of her and her sister but I could only get one picture on my signature. Sorry if it's huge. I will try and find a tutorial on how to add more pictures. Thanks

 

[imkksmom]

well that didn't work- what a tease huh? I'll work on it

 

[kailatilear]

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...

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.

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...

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.

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

Brooke and Jessica Post-Transplant

Brooke and Jessica this past Easter


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.

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

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!

Welcome!!!! I am so glad your Brooke is getting her wish. You have a beautiful family What a special bond between Jessica and Brooke!!!

 

[kailatilear]

Abby still hasn't passed the penny yet They said at the er just wait a little bit and if it doesn't pass then contact the GI dr. When I asked a little bit, they just wait and you will know. I think I am going to call them in the morning if it doesn't pass and see how long we should wait. She is still in pain with the compression fractures.

 

[imkksmom]

okay trying again- well this just isn't working- anyone want to help me? Thanks

 

[tinytreasures]

wow 3 new families today
shruley, imkksmom and jwallaceent

imkksmom just post the picture in a thread instead of your siggy
it has to be really small to fit in your siggy

my2girlsrock good luck with your next round of chemo, so glad you are 1/2 way done

Kris I understand

 

[brookerene]

okay trying again- well this just isn't working- anyone want to help me? Thanks

I'm not too familiar with how to resize in photobucket but in your photo editing program you should be able to crop your photo and adjust thepixels... that is what I do. I crop them to 4x5 at 96 dpi and save them with the name_web to differentiate between the web and originals....

and are you starting a ptr?
Thanks

 

[imkksmom]

I got my other daughter's picture to post in my signature but not my wish Angel Kaila. I'll try it here. I think I need to be added to the upcoming trip with no dates or something like that

 

[imkksmom]

wow it is big even though I resized it in Photobucket- weird. The big picture is my angel Kaila. She is going to request a Disney trip for sure

 

[Mom2mitokids]

wow 3 new families today
shruley, imkksmom and jwallaceent

imkksmom just post the picture in a thread instead of your siggy
it has to be really small to fit in your siggy

my2girlsrock good luck with your next round of chemo, so glad you are 1/2 way done

Kris I understand

Thank you

 

[jj0plin]

sometimes you have to refresh (hit F5) for it to show up smaller. Your daughters are adorable!

 

[kailatilear]

I cannot believe we are 1 MONTH AWAY!!!!!!now if we can get the penny to pass, back pain subsides and no more fractures until then we are good to go!!!!

 

[tinytreasures]

I got my other daughter's picture to post in my signature but not my wish Angel Kaila. I'll try it here. I think I need to be added to the upcoming trip with no dates or something like that

your pictures are prefect and so is your siggy now

 

[kailatilear]

The penny has been found

 

[jj0plin]

eeeww and yay!!!!

 

[my2girlsrock]

Abby still hasn't passed the penny yet They said at the er just wait a little bit and if it doesn't pass then contact the GI dr. When I asked a little bit, they just wait and you will know. I think I am going to call them in the morning if it doesn't pass and see how long we should wait. She is still in pain with the compression fractures.

Oh poor girl.... My cousin swallowed a penny when he was small it took about 3 days but it finally passed on it's own.... I hope it passes on it's own...

Sending to Abby I hope she gets some relief soon, some for you as well because I know it isn't easy to see your child in pain.....

 

[my2girlsrock]

The penny has been found

YAY!!!! I just posted on your previous post!!! I guess I should've read further along before I responded...

 

[syammt]

I know this is for wish trips and that we are done with our wish trip, but I just wanted to give an update on Madison for those of you who followed our trip report. We are at the NIH. Got here Sunday and are supposed to go home Wednesday, but that is not looking good. She has been running a low grade fever in the evening since before x-mas with a productive cough and some really yucky looking bumps. Here doctors at home ran what test they could think of and just could come up with a reason for the fevers, so I got in contact with her doctor here at the NIH and she flew us here. They did a ct scan today of her lungs and they look clear, so no pnuemonia. They have drawn enough blood to fill another body and we are waiting for most of those results to come back. One of the results came back this evening and there is something growing in her blood. They said it was some kind of bacteria, so they want to draw more blood to run that same test again. They can't find a vein to draw anymore blood so she has to go see an IV specialist tomorrow to have an IV put in. She is taking is all really well and being my little trooper as always. Just felt moved to post this update. Hope it is ok. I know there are many out there who really seemed to take a liking to Madison and I think they would want to know what is going on.