|01-27-2013, 12:26 PM||#1|
Join Date: Mar 2005
Location: Richmond, VA
First time traveling w/ son in wheelchair
Our 22 year old son became very ill with a rare genetic disease that caused copper to accumulate in his brain - he got sick a little over a year ago. We have been to WDW many times but this is our first time with him since he got sick. He is unable to talk, chew, swallow or walk and has severe dystonia and is completely tube fed. He requires 24/7 care at the moment. The good news is he is completely all there cognitively. =) He LOVES Disney and I'm really excited to get him there - I think it'll good for him! (and all of us! it's been a heck of a year!)
I'm doing all the research I can and these are my concerns:
1. I'm worried about where to feed him - obviously too old for baby care centers. Does anyone have any suggestions?
2. I'm also a little worried about transferring him into ride seats - he can't walk at all, we kind of stand him & pivot him to transfer - he can bear weight, just not move his legs well. Do you think rides requiring transfer are doable?
3. does anyone have any hints about where to keep all his stuff we have to bring with us? Locker or bag that hangs well on a permobil wheelchair? We're kind of new to the whole wheelchair travel thing - figuring it out as we go!
4. My last concern is when he gets excited, he does this neurological humming thing occasionaly. (it is loads better than it used to be!) I'm very worried it'll drive others nuts or disturb them.
I just want to be prepared so he can have fun. He loves Disney as much as I do and I really, really want this to be fun for him. His life right now is basically medical facilities - PT, OT, speech, etc.
Any hints on traveling with someone with this many issues would be very welcome.
Thanks very much -
(dh) (me!) (dd 24) (ds 22) (dd 15) (ds 6)
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