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Old 07-16-2008, 08:55 AM   #1
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PatMcDuck's Avatar
Join Date: May 2000
Location: New Jersey
Posts: 6,167

Make a Wish Trip to DisneyLAND, not WDW!

I am new to this pre-trip report thing, but here goes. Bridget is now 16 years old and is our "Wish Teen", not child. HA!

I will try and be brief. She was healthy until January 2007, when she came down with mono. But, she got sicker and sicker, very high fevers round the clock for days and days and weeks. I took her to the pediatrician 3-4 times in 2 weeks. Finally she was admitted to a local hospital in late Jan for dehydration and wonky blood test results. She was very sick and got worse during the week in the local hospital, requiring oxygen, chest tubes, and finally even a respirator. She was then transferred to CHoP (Childrens in Philadelphia) and diagnosed with a rare blood condition called HLH. She continued to go into multi organ failure, liver failing, on dialysis for kidneys, pancreas failed, still on respirator. But treated with chemo and on support, she recovered after 3 weeks at CHoP, and finished her 8 weeks of chemo. She was very weak, and lost her hair, but finally seemed to be on her way back in June 2007. In July, she got a sunburn, and got very ill with muscle pain (could barely walk) and a severe rash on arms, legs. We returned to CHoP, and she was admitted and eventually diagnosed with a rare rheumatological condition called juvenile dermatomyositis. Treatment includes high dose steroids and many other drugs. By September, she was improving but still ill. Pain in knees and hips was diagnosed as severe Avascular Necrosis, and required major surgeries on both hips in October 2007 and both knees in December 2007. After the October hip surgeries, she got a pulmonary embolism (blood clot in lung)as well. She had to be completely non-weightbearing for 5 months, using a wheelchair and sliding boards to transfer positions. She is finally somewhat recovered from the surgeries, and 6 months of gastrointestinal symptoms (daily vomiting, frequent diaherra, pain).

We applied to Make a Wish in November, after the first round of AVN surgeries. First Bridget wanted to go to a spa, and to be pampered. Sounded good to ME, but we had trouble finding a suitable location. Either they did not allow teens, of if they DID, they also allowed much younger kids. She decided to change it to DISNEYLAND in California.

More in the next post!
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