|02-15-2010, 02:46 PM||#1|
Join Date: Feb 2010
Getting his Wish, James is Going to WDW- GKTW March 16, 2010
Hi, I hope I'm doing this right! I guess I'll do a short intro to our family! I am Amber and my hubby is Mike. We have 6 super amazing children. DS D is 17, DS C is 15, the twins James and DD MY are 12, DS E is 10 and DD MZ is 5. James and Macylea were born at 29 weeks and spent about 3 months in the NICU. James hard about 5 minutes of no oxygen, and ended up with CP. Macylea, fiesty as ever, ended up with glasses...James is a happy sweet 12 year old boy who up until a year ago loved to swim and ride his bike, and play with his brothers and sisters. His CP caused him to be clumsy and he is developmentally delayed, he operates at about an 8 year old level, but his reading/math abilities are at about 5 yr/old. Then last May James developed a severe stomache ache. After x-rays, doctors thought James had pnumonia and he was sent home. Over the next few weeks James' health deteriorated rapidly. Finally, after about 6 months, doctors found several masses in James' abdomen. James is now in a wheelchair, due to muscle wasting, and cannot eat food very easily. He has a feeding tube that gives him al his nutrician. Unfortunatly, the cause of James illness is still unknown, so we have no idea what his prognosis is. He has spent much of the last year in the hospital, and to make matters worse, we have to fly form Alaska to Seattle for these hospital stays. He was in the hospital for every holiday last year except Thanksgiving. Also, since he is still "undiagnosed" he endures many painfull tests, while doctors try to pinpoint why is is so ill. James was granted his wish to go to Disney World, and we all going in March. The other kids are delighted and I'm so glad that everyone gets to be special during this trip. With me being out of state so much with James, my oldest sons have had to pull a lot of weight since James got sick. Everything form cleaning, to shopping to cooking, and have done so without one complaint! My hubby has shown what real men do when faced with a crisis...he has been the most terriffic rock a woman could want. He has taken so much time off work to be home with the kids while I'm away, and never once has he complained about finances. One of the interesting things James has had happened during this illness is that his eyes no longer work in stereo, making it hard to see well. James LOVES books, and really loves stories about Egypt and Pirates. Every night, and I mean EVERY night, his brother Elijah reads to him until he falls asleep. Again, though it means that Elijah has to read what james wants, he has never once complained about this, he just one night started to read to him, and kept it going. Elijah even gets excited to hear a book James wants is at the library, and will check out books for his brother on his library day. James twin sister Macylea does so much for him I can't list it, just know that she is right hand girl, and whatever he needs, she does. Finally the baby of the family, Mackenzie, had to give up being a "baby". James requires so much care that she to grow up. Since James can't get up and paly now, she brings toys to him, and plays with him on the floor, or reads him books, or just snuggles him on the couch if he's needing some down time.
Now about the wish...James wanted to go to Disney World and he was approved. I'm nervous about traveling with a child who is in a wheelchair and has a feeding tube! Can you bring his formula on the plane? I have so many ????'s The kids are super excited about GKTW, and everything. I have been reading every thread before mine for tips.
Last edited by alaskanabbott; 08-31-2013 at 09:42 PM.
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