Suggestions/tips on taking a3 yo dd with severe CP?

Walt's#onefan

Earning My Ears
Joined
Mar 13, 2004
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11
Hi ! I am taking my 3 yo DD to disney world for her first time-june18th-28th! She has Mixed type-Hemiparesis/semi-lober holprosephaley and is a non-walker(uses a PANDA chair),non-talker, non-eater. Any tips on taking a child with cp who uses a panda? Also tips on reliving those leg cramps? any info appreciated!
 
Hi--
You've come to the right place-- the people on this board have a wealth of info! My DS 7 has CP and uses a w/c. I can't comment on a lot of your questions, but are you staying at a hotel with a hot tub? After a long day at the parks, my DS loves to be stretched in the hot tub or a heated pool-- it helps with tightness. If your daughter gets overstimulated, as my son does, take frequent breaks. We made the mistake of trying to do it all the first time, and he was overwhelmed. Now I just tell myself we'll have to go back for another visit if we miss something! Good luck, and have a great trip!
 
Hi, We just returned from a trip to Disney World with our 3 year old daughter who has severe bilateral Schizencephaly, very similar to your daughter's holoporencephaly. Our Chrissy is also non-verbal, non-ambulatory, and has severe CP and Epilepsy. She went to Disney in her Quickie Zippie tilt in space chair. We had no problems at all. We went to guest relations in the park and explained her problems. She was with us. They were very niced and gave us a GAC with every stamp available I think! She is also vision impaired and got the stamp allowing her front seating at shows (we were seated down front for everything, including Philharmagic). They also stamped her card for being allowed to wait in a shaded area, the stamp for our party being allowed to use Fastpass whereever available. We also had out two year old son who has Spina Bifida with us. He was in a stroller instead of his wheelchair, so they stamped our GAC allowing us to use his stroller as a wheelchair. We had no problems anywhere at all, and Chrissy loved the trip.
She also has sensory issues, but she loved the characters, especially Mickey and allowed them all very close to her. It was a wonderful trip and I am so glad we decided to take her. It will be a memory for us forever!
Angela
 
We just got back from a 12 day trip to WDW. We've been coming for 18 years and my youngest has been using a wheelchair at WDW for 16 of those years.
She had CP and multiple other disabilities.
I'm so behind on things after our trip, and I tend to get long, so here goes a short answer.
You can take your DD to request a Guest Assistance Card (GAC) at Guest Services in any of the parks. The GAC is valid in all the parks (but not the water parks) and can be given for up to 6 people (the person with a disability plus 5 members of their party). You don't need a new one each day, it will be valid for your length of stay. There may be times when you have to split into groups of less than 6 people (some rides/attractions don't have room for 6).
Be ready to explain your DD's needs - in your case, the major need would be to bring the Panda in lines and have it treated as a wheelchair. It should be able to fit where ever a wheelchair would, but since she is small and probably sits lower than a person in a wheelchair would sit, she may not be able to stay in it for some rides that have wheelchair cars (Aladdin's Magic Carpets, Pooh, Buzz Lightyear). When our DD was little and more easily "portable", we took her out of her wheelchair as much as possible. Depending on your DD's size, she may be able to sit on your lap or in the seat next to you.
Spinning rides (like the teacups) were good "tight muscle looseners" for my DD. It's kind of hard to get her on those rides now at 18, but they were helpful when she was littler. We also took her out of her wheelchair for stretching. You can go to First Aid in any of the parks and use a cot or got to Baby Care in any of the parks -both good places for a quiet, cool rest.
One of the other things we did to stretch was I would place her lying down face up along my legs with her head at my knees and her hips at my waist. Her legs would go up along my chest to my shoulder. That provided a good stretch of her knees and helped a lot with leg cramps. (I hope this makes sense). I've got another way to relieve cramps, but it's even harder to explain. The hot tub is good too, like roadtripper mentioned.
Also, dehydration can make leg cramps worse, so make sure she is getting enough fluid. Since you say she is a non-eater, you will be in control of her fluid intake, you would want to watch for a decreased amount of wet diapers/urination or dark urine. If it doesn't change from her normal, she's probably getting an adequate amount of fluid.

I see I ended up with a long. short answer. Think of some more questions and we'll come up with more short answers. ;)
Have fun!
 

We have two daughters in wheelchairs. Neither use a PANDA chair. One daughter has Mitochondrial Encephalomyopathy which includes multiple disabilities. She is 10. Our other daughter is 6 and has Aicardi Syndrome which includes eye abnormalities, schizencephaly, seizures daily and more. She had to have her leg amputated due to cancer. I can tell you that Disney World continues to be the most wonderful place in the world for our family. The CMs, characters and everyone are wonderful there. They never fail to bring smiles to our daughters faces, tears to my eyes and joy to my heart. Smiles are not always that easy to come by with our daughters.

Everyone has given you such wonderful information. I just wanted to tell you to have a great time. If I can help in any way please let me know!
 
We have used a Panda before, tho not at WDW (DS graduated to a Zippie after he turned 4). Remember that the Panda looks a lot like a regular stroller, so be sure to alert folks that it is in fact a wheelchair, for stuff like bus access, ride access and so on.

DS, now 6 and with gorgeous red hair, is a non-walker, non-talker, but (thank God) he does eat, if only pureed food. WDW was the first vacation we took that he didn't hate. We took his 2nd trip there over his 6th Birthday this past October where he was treated like visiting royalty. Oh man, the smiles we get from that boy when we are at WDW or when we talk about being at/ going back to WDW! We will be going back at least once a year from now on, thanks to buying DVC last summer (Yay!). Got to be the most wheelchair friendly place on Earth.
 
Thanks for bouncing these old messages back to the top.
 












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