|04-03-2009, 01:28 PM||#1|
Join Date: Mar 2009
Location: Elkhorn, Nebraska
Pipers Make a Wish trip to DisneyWorld 4/9-4/15-09
I've been lurking around here for about a week now, trying to get as much information as I possibly can, and thought it was only fair of me to share my story as I've been reading some of yours....
My name is Becky and have been married for almost 15 years. We have 3 awesome children, Danny who will be 14 next month, Piper, who is my wish child is soon to be 10 going on 17, and my baby Sophia who is soon to be 3. Don't ask me about the age gaps, I have no idea why or how??
Piper was born with BOR syndrome. She was born with one very small kidney. She is deaf in one ear and is hard of hearing in the other. By the time she was 1 week old, she was put on dialysis. After the first day of that, the catheter got stuck to the inside of her stomache wall and then had to go back into surgery and replace the catheter. After the new catheter was placed, her small kidney decided to kick in. So after some time (you'll have to excuse my memory, for it is shot) she had the catheter removed, and was finally discharged at about 1 month old. Obviously was on many medications due to her kidney wasting her iron, vitamin d, etc. As some of you may know, with chronic kidney disease, your growth, your appetite lacks. She has never taken a baby bottle. (I couldn't nurse her either) She never was hungry. So she had a g-button placed and was fed 24 hours a day through the feeding machine. (thats what I call it) She was a very very small child until now. She didn't start eating food till about 3 years of age. So with that being said, she was a very quiet baby! She never fussed about being hungry!
When Piper was, I think 3 years old, she had her tonsils taken out, and was sent home the very same day. Shame on that doctor. That very night, I had woken up in the middle of the night because I heard something. To this day, i couldn't even tell you what the noise was, but when I did, I went and check on Piper and found her blue. We called 911 and was given instructions as to what to do. I couldn't take her out of her crib right away because she was hooked up to the feeding machine and the tube was through the railings. I was panicking! When she arrived at the hospital, her oxygen level was 17. (If I remember correctly) So for those of you who have children getting their tonsils out, have them stay the night!!!!!
Almost 10 years later ..........
I was blessed to have been able to donate a kidney to Piper in July of '07. We were very lucky to never experience dialysis, or Piper being super sick. (except when she was first born) Since her transplant, she has gained about 20 pounds and grew tall enough to compare to her peers. She is finally IN the growth curve rather than being in the negative percentile all the time! She has been doing fantastic since then. Poor thing has to drink 2 liters of fluids everyday. It wouldn't be so bad if she would like kool-aid, milk (which she never was able to have before transplant because of her diet restrictions) or juice, or even caffeine free pop! She only wants water, and to make my life more difficult, it can't be cold!
Well that is my story as short as i can make it. There is so much more, but don't want to bore you guys any longer.....
So duh, Piper was referred to Make a Wish and wanted to go to DisneyWorld. None of us have ever been there, so this will be a WHOLE new experience for us. MAW has been very generous to us and I am truly grateful and can't wait to give back!
If anyone has any helpful info that I may have overlooked , please do share!
Our pre trip report http://www.disboards.com/showthread....9#post31157769
Our POST Trip Report
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