Newcomer

[alizesmom]

Hi, I'm Karen and just found this site. Awesome. My son is 4 and we will be going to WDW in Dec with the help of MAW. Alize has CP, profound MR, cortical visual impairment, a trach, a g-tube and is shunted for hydrocephalus.
He needs a lot of equipment available like oxygen, CPAP machine, humidifier and all of his meds and feeds. I feel I need to start getting things together now. Any information would be helpful. We are driving down from PA as I am paranoid about the airlines losing something important. Where is the GKTW village in relation to WDW? Will we need to drive to the world daily or is there a shuttle? Will there be problems suctioning Alize in public (he can't always wait for me to find a convenient bathroom)? Are there places we can take him out of his wheelchair and lay him down? Where can I get the phone numbers for a good pediatric hospital in case of problems? I've been to WDW before Alize joined our family but am unfamiliar with approaching it from a disability standpoint. I really want this to work because Alize's greatest enjoyments are hearing people (especially children), music and being outside. Sorry this is long but thanks. Karen

 

[Cheshire Figment]

Hi and to both DisBoards and disABILTIES!

You may want to start by clicking on where it says "disABILTIES" at the top of this page it will take you to the Index. The top item is the "disABILTIES FAQ" which will gives lots of useful information.

In the index look for threads that have either MAW or GKTW in the title; that should give some good information for a start. Your "wish grantor" from you MAW chapter should be able to provide you with a lot of additional detail. GKTW is about 10 miles East of WDW just off US192.

Every park (including the water parks) has a first aid staion staffed by at least two RNs at all times when the park is open. They do have places where someone can lay down to rest for a while.

From WDW the closest hospital would be Celebration Hospital. From GKTW it would be a tossup between Celebration or Kissimmee Regional. For a specific pediatric would be the Arnold Palmer Children's Hospital which is almost in downtown Orlando and about 20 miles from WDW. If you have a real emergency let the Rescue Squad, in consultation with dispatch, make the decision as to where to go.

I hope this will help you to get started, please ask more specific questions as you need to.

 

[SueM in MN]

I'd suggest you talk to his doctor's about suggestions of where to go in case he becomes ill or needs medical assistance. Also, a letter from the doctor kind of 'summarizing' his medical history and 'introducing' him to caregivers. It should have the doctor's name and other contact information.

I have not seen people suctioning in public, but have seen people doing tube feedings.
GKTW has a website ( www.gktw.org ) that shows a lot about the Give Kids the World Village. There are quite a few posters who have been on MAW trips and to GKTW. If you can't find any of their posts, I'm sure some will be along to give you some input.