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kernden
01-24-2001, 01:46 PM
What a wonderful discussion board! I'm new to the board and have a question of my own. My daughter, who is 16 years old, was born with spina bifida and hydrocephalus. She uses a spiffy little Quickie TNT for mobility--standing is NOT an option.

We've been to WDW every year from 1994 to 1998 and every trip was magical. However, they weren't without their fair share of difficulties. Our first trip in 1994 was--well, let's just say that we learned a lot of valuable lessons. At the top of that list would be, "Never let the flight attendant stow your wheelchair cushion." lol It was our first trip to fly with a wheelchair and we were clueless. After changing planes in Dallas, we went on to Orlando and her cushion went on a fun-filled ride from coast to coast. Katie spent her first 2 days at WDW sitting on a hotel pillow. lol

Each year, our trips became more organized. At the same time, they became more frustrating. As Katie got older, she also grew and became heavier. On our last trip in 1998, she weighed around 150 pounds and the tranfer/lifts into some of the rides became nearly impossible. We tried to emphasize that the lifts were no problem, but I think the grunting and groaning, and the huffing and puffing were a dead give-away. lol I could see it in her eyes that she felt like "a problem". As the week went on, the more quiet and grumpy she became. I don't blame her. Rolling around in a "sea of butts" is bad enough. The stares and the feeling of being invisible are overwhelming. But those are things that are out of her control. She tries to focus on things that ARE in her control. She's a good-natured, fun-loving, happy teenager. BUT if you give her "attitude", she will give it right back, bud! lol

I would love to see someone develop some sort of mechanical lift or a side-ways transfer mechanism so that she could go to WDW and feel a little more independent. On our last trip, I would look around and see teenagers running around together from ride to ride without their parents attached to their hip. I would give my right arm to give Katie that feeling. If NASA scientists can build a space station, I feel certain that they could come up with some sort of device that would help people who use wheelchairs to transfer to a ride at WDW with independence and dignity. Has there been any discussion on this board about this? Thanks for the forum!

Michigan
01-24-2001, 02:33 PM
kernden welcome to the boards. I have 2 girls with spina bifida and hydrocephalus ages 3 and 11. My 11 year old also has a TNT.

I wish each ride had a hoyer type lift to allow people who can't transfer on ride the rides too. Each time we go there is one more ride that my oldest can't get on this time it was her favorite Peter Pan and the merry-go-round.

Wheelsie one of the moderators on this board also has spina bifida. My oldest is an L-1 and the youngest one the jury is still out on her feeling is the same as an L-1 but she can kick and lift her right leg when you ask her to. I think Wheelsie said she is an L-1 also. By the way, she is a really neat person, I got to meet her at WDW in Dec.

SueM in MN
01-24-2001, 04:50 PM
Welcome from me too. My dd is a very tiny, thin 15 yr old with cerebral palsy and other disabilities. We can still transfer her, but it's getting harder and harder. She can stand and take a few steps if someone completely holds her up, so we are a little better off for transfers. It is still hard and there are less and less things she can go on each time.
Our least favorite park is MK because it is the least accessible. They have done some neat things with accessible cars as they have renovated rides. Buzz Lightyear, Winnie the Pooh and Imagination (bad ride, but neat car) have kind of innovative cars where they have built a ramp into the car. If they could figure out how to do that on each ride, we'd be happy. (Although, when we rode Imagination, the ramp was put back wrong by the last user and it took 3 CMs to figure out why our DD was facing backwards when they loaded her in the car).Safari Steve has posted that they developed a wheelchair accessible boat for the Jungle Cruise, but they haven't been able to get it to work consistently yet. There are still so many things my dd would like to go on that are too hard to manage.
The best park for accessibility is (IMHO) MGM Studio. Last year, my older dd took her sister in the wheelchair all by themselves for the day and had a great time. Since it's mostly shows, the 2 of them could do it themselves.

SueM in MN
Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)

kernden
01-24-2001, 05:04 PM
Thanks for the reply Michigan! I have no idea why, but it made me cry! lol Go figure, huh? Just to read words written by another mom who knows EXACTLY how I feel brings tears to my eyes. I had to wait a minute before I began to type this message to compose myself! lol

Katie is an L2, I think. It seems silly, but from the day she was born, doctors and nurses have told me from time to time what level she is. For some reason, it has never "soaked in". She had a lot more movement when she was younger. She has had decompression surgery for Chiari II and multiple shunt revisions in just the past 2 years or so. For 11 years, she went without a revision. Then it was like someone flipped a switch. She had a cranial vault expansion this past October, and she's still having headaches.

With all of this going on, our trips to WDW have been put on hold. I was hoping that if we waited long enough to go back, there might be some changes made on the accessibility issues. lol Hey, it could happen! lol Disney always seems to go the extra mile on everything they do. This might be next on the "to do list". Is there anyone in this forum that could point me in the right direction for checking into this?

mhopset
01-25-2001, 09:40 AM
I feel the same way about swimming pools. I love to swim and get in the water with my wife and son, although since I can't do stairs I jsut sit and watch. I wish they would start building ramps into the pools so people that can't do steps can swim also.

kernden
01-25-2001, 12:06 PM
Thanks SueM, I hadn't thought of MGM in that way. That is such a good idea. Hopefully, on our next trip, we will be able to take a friend along. Then the 2 of them could spend the day together alone. Now I have something to look forward to on our next trip. . .big smiles!

Michigan
01-25-2001, 02:43 PM
mhopset when Disney closes it's pools for renovations they have been adding a wheelchair transfer platform that you can wheel next to slide over onto and then hold on to the rail and sort of bump your way down into the water. My oldest DD used it in Dec while not as great as a pool lift it's better then nothing.

SueM in MN
01-25-2001, 04:37 PM
We haven't seen it yet, but I've been told that the pool at OKW at Turtle Pond has been made accessible. We were planning on looking at it when we were there in Sept, but had to leave earlier than planned to miss a possible hurricane. I'll be real interested to see it at our next trip. @

SueM in MN
Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)

Wheelsie
01-26-2001, 02:02 PM
WELCOME WELCOME WELCOME!!! Im WHeelsie!! And yes Im an L2 I believe (I never listened to the DRs tell me that either LOL) I do have Spina Bifida! Im 26 and the same as your daughter as I got older lifting me is NOT an option (altho DH does it on occasion if I fall or something when he's trying to be really special to me) I have gone to WDW for 2 yrs...this yr and last...

I do feel WDW has made great strides and also feel they leave ALOT to be desires....its sorta a dble-edged sword I think!

I also went to USF this past trip....and if you'd like to see what CAN be done to make a ride more accessible Id advise she ride Men in Black (I think Nasa did get a hold of this one LOL) the ride for a chair is very neat...its hard to explain really but if youd like to email me I'll be happy to try.,...its one of those thing (I feel) you have to actually see to believe how neat it actually is!! :)

Welcome kernden!! Im more than pleased to see ya here!! :)

Wheelsie Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)
and
DisneyTips (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=87009194)
wheelsie@mail.wdwinfo.com

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kernden
01-26-2001, 08:56 PM
Hey Wheelsie!

Thanks for the info! You're just a little older than my daughter! Just a "little whipper-snapper." lol I would love for Katie to get a chance to visit with you. She hasn't been feeling up to snuff for a couple of weeks, but she's a little better today.

I want to tell her about the Men in Black ride. She'll be thrilled to hear about it! We haven't been to Universal since 1994. We've always focused more on Disney. It sounds like we've been missing out! lol

When she's feeling a little better, I'll get the two you together. When her head's hurting, she's not really in the mood to visit. Maybe the 2 of you can swap Disney stories! Thanks for the post.

Michigan
01-27-2001, 04:30 AM
kernden what state do you live in? Is your DD still having shunt problems? If so did they try a smaller valve or double shunts? Hope she feels better soon!

SueM in MN
01-27-2001, 04:34 AM
I'm glad Universal has been made more accessible. We went there several times in the few years after it opened and it had all mainstream lines and was not very accessible, so we complained and never went back. We might have to make the trip now. My dd liked the Back to the Future ride -the original "grandma all finished ride" - dd's name for rides too wild for Grandma. e

SueM in MN
Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)

Wheelsie
01-27-2001, 04:21 PM
awww yeah!!! Universal is DA BOMB!!!!!! (I know I sound like a silly teeny bopper LOL)And if I ever get my trip report finished (Im working on it Barry!!! :) :D)you'll get to go to each ride the same way I did....the reason its taking soooooo looooonnng to write is because Im explaining everything in such great detail for all to know how accessible things are :)


and yes Id like to visit w your daughter...I do hope she gets to feeling better!! :) wouldnt want her getting all head achey during your trip!!! :)
Wheelsie Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)
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DisneyTips (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=87009194)
wheelsie@mail.wdwinfo.com

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kernden
02-01-2001, 11:05 AM
This is the first time I've been able to check the boards in 5 DAYS!!! I hate it when that happens! lol In answer to the shunt question, Katie has a VA shunt. She started out with a VP and did well for 11 years. Her surgeon explained it to me this way. When shunts are placed in babies, they are placed with the illusion that the shunts won't drain when the babies are upright. The only problem is that the shunts drain when the babies are upright. It's that dern gravity thing. AND since they continue to drain when the babies are upright, the normal skull growth doesn't progress the way it is supposed to. Instead of the shunt valve holding the pressure steady in the ventricles, causing the brain and the surrounding fluids to push the soft skull outward, the draining allows the ventricles to empty and become small. Yes, she had skull growth, but just not enough to allow her ventricles to be nice and full, providing a wonderful place for the tip of the catheter to float around in.

For Katie, there just wasn't enough room up there. The tip of the catheter would continually become lodged in the fibrous tissues that line the ventricles. From June of 1998 to October 2000, Katie has had well over 25 surgeries--I stopped counting. She has had decompression surgery for Chiari II, 2 infections, shunt revisions too numerous to count, and last but not least, cranial vault expansion to make more room for the ventricles to fill and open up.

I am happy to report that THE SHUNT IS WORKING!! I haven't been able to say that in a very long time and it feels SOOOOO GOOD!!! lol The headaches that she suffers with now are stress related migraines. She has gone through the 7th and 8th grades on homebound. She began this school year on homebound, but I am happy to report that she started classes full time this past Monday and has remained migraine free. Can you believe it?!

Of course, this is the Reader's Digest version. There are plenty of details, but I decided to spare everyone. lol Seriously, though, this is why I am trying to put another trip together. She's been through so much. I would like to take her somewhere other than the hospital. lol That is why I have been enjoying these boards so much. Everyone is so eager to share information. It makes it easier to try to plan WDW on a budget! Let me just say--I LOVE THESE BOARDS!!!! Thanks!

Kernden