Hope she can go this year!

[vllebl]

We went to DW last August. My step-daughter, her boyfriend and her daughter were supposed to go with us. My grand-daughter has multiple disabilities and ended up spending the summer in the hospital. She has hydrocephalus and the tubing in her abdomen was infected with staph. It took them a long time to figure this out. She had to have the shunt removed and a temporary shunt put in. Her abdomen had to be drained and flushed and her appendix removed. She was on iv antibiotics forever. She was 4. We are planning on taking her this year. She just had surgery again to remove another shunt because the staph was in the shunt. She just finished her iv antibiotics. She has all her hair shaved off - again. They inserted a probe in the top of her skull and made a hole in her brain for the fluid to drain instead of putting another shunt in because she's had 3 staph infections with them. She was also born deaf and has a cochlear implant so she can hear. After the fluid build-up last summer she has permanent nerve damage to her eyes and was declared legally blind. She has epilepsy and cerebral palsy in addition to everything else. She gets so excited when she sees DW rides and shows on tv. She wants to see Mickey Mouse and Foofy(Goofy). She is now 5. I call her a princess and hope to have something done for her to make her feel like a princess while we're there.

Keep her in your thoughts. She'll only be a little girl once and we want her to experience DW while she can still see something (in case her vision gets even worse). Of course, if she does get to go, we'll all be crying every time we turn around because of the joy that she'll be expressing!

 

[SueM in MN]

Keeping her in my thoughts.

If you have not looked at the disABILITIES FAQs thread, I would suggest you look there, especially in post #3 and post #6.
There is a link to that thread in my signature or you can find it near the top of this board.

Are there any specisl questions you have?

For the Princess experience, I'd suggest a character meal if you can swing it, either at the castle in MK or in Norway at Epcot. Both have the princesses.

 

[OneLittleSpark]

You're in my thoughts and prayers; I'm sure you'll have a truly magical trip! Disney are very good at recognising a true princess, so I'm sure that they will treat her like the royalty she is. There are loads of princess things in the parks, from Bibbity Boppity Boo to Princess Breakfasts or Cinderella's Royal Table - she'll be on cloud 9

I don't know whether you've looked into touring with a disability yet or not, but if you want any help we're here for you. Sounds like you'd benefit from a Guest Assistance Card, to use a stroller as a wheelchair. That will let you take her stroller into lines and buildings, so you can conserve her energy for the fun stuff. You will also be able to use the wheelchair viewing areas for parades and shows, if you feel that that will help her.

If you want more advice, there's plenty more we can suggest, but I won't swamp you with information just yet!

Sending a crate full of pixie dust your way

 

[peemagg]

Have you checked into a Make a Wish trip for her?

I agree that you should do the Bibbiddi Bobbiddy Boutique with her and then do a princess dinner with her all dressed up. I think she will really love it.

 

[weswife]

Hello,

My DD also has hydro., epl. and other dis. as well. She uses a wheelchair fulltime. In 2007 my DD went through all of the same med. probs. you mentioned. She finally got a new shunt in the end. She now is shunted to her heart and it works great!

A character dining experience would be wonderful for her!!!!!! Its so worth it! My DD is 17 but LOVES all of the characters!!!!!

If I can be any help, please let me know!

Have fun planing your trip!!!!

 

[cm8]

I will be praying that your DGD will be able to go to WDW and see all of the things she wishes for. I can just imagine the look on your face when she does finally get to go. Hope you all can make it before she loses all of her sight.

 

[vllebl]

Thank you everyone for your good thoughts and wishes.

I have been a lurker for some time and have gotten many great ideas. I've already planned on getting a GAC to use a stroller as a wheelchair. She can't walk far with her crutches and gets tired very easy if she has to walk. I also want to try to get her up front for shows and things because of her vision and hearing. Too much background noise makes it hard for her to hear and there have been times when she just takes her receiver off because it's too annoying and she'd rather not hear anything than hear a mix of noise.

Her epilepsy medication makes it so she can't sweat to cool her body down. She can overheat if sitting in the sun for too long. We plan on taking a spray bottle to spray her down when she needs it. They use one at school when she goes outside to play.

If she makes this trip maybe I'll be able to help someone by letting them know what worked and what didn't work for us. I've received so much good information that I'd like to pay back a little.

My 12 year old son (soon to be 13) has ADHD and I've read many posts regarding that over the years. He's gotten better as he's gotten older, but his impulse control needs a lot of work yet. It helps that he's very social and loves younger kids. He meets new friends everywhere he goes and just strikes up conversations with people in line. It makes the time go faster while waiting!

Now I'm getting excited about going and I've got 129 days to wait!

 

[OneLittleSpark]

Thank you everyone for your good thoughts and wishes.

I have been a lurker for some time and have gotten many great ideas. I've already planned on getting a GAC to use a stroller as a wheelchair. She can't walk far with her crutches and gets tired very easy if she has to walk. I also want to try to get her up front for shows and things because of her vision and hearing. Too much background noise makes it hard for her to hear and there have been times when she just takes her receiver off because it's too annoying and she'd rather not hear anything than hear a mix of noise.

Just to warn you, the wheelchair spaces in shows are often at the back of the theatre. If she's OK to transfer out of her stroller, you can do this instead. As far as I can remember, you can get to the front of most theatres without having to do any steps. If you get the GAC stamp for sitting up front it will save time explaining things to CMs.

Her epilepsy medication makes it so she can't sweat to cool her body down. She can overheat if sitting in the sun for too long. We plan on taking a spray bottle to spray her down when she needs it. They use one at school when she goes outside to play.

The stroller as wheelchair will be able to help with this, as she can use the sunshade and clip a battery powered fan to the frame. There's also the GAC stamp for waiting out of direct sunlight, where possible.

As Peemagg said, you might want to try talking to your local MaW chapter. I know that they have provided assistance to some people who have already booked their trip. It might make your holiday a lot easier to have their help, even if you don't need any financial assistance. Only MaW kids get front of the line access, which would help to take a lot of additional strain off her body. They may also be able to work a little extra magic to make the trip even more memorable for her

 

[vllebl]

Thanks for the extra tips. I haven't had to get a GAC before, so I'm not really sure what help they will be able to offer other than using a stroller as a wheelchair. She is very small for her age so carrying her short distance is okay. We just can't carry for long distance or hold her in a line, it kills our backs.

I've suggested MaW to her mom. She wants to wait until Cheyenne is older and can decide for herself what she wants her wish to be. Right now she'd agree to anything that anyone said to her. I know they make allowances for different family situations, but if they go to DW as her wish, they want us to go also. Cheyenne was born while Amber was still in high school. She came to live with us while she was pregnant and hid the pregnancy until she was in labor. They now live next door and we are VERY close to Cheyenne. We've always been there to provide financial and emotional support to both of them and it just wouldn't be the same if we weren't there for an extra-special trip.

That's why we want to take her ourselves this year, in case we can't be there if she decides to do a trip sometime in the future. Amber and her boyfriend can't go this year. Neither one of them has any time left due to spending so much time in the hospital with Cheyenne. Now I'm just rambling!
Thanks, you're a great group of people!

 

[cm8]

Thanks for the extra tips. I haven't had to get a GAC before, so I'm not really sure what help they will be able to offer other than using a stroller as a wheelchair. She is very small for her age so carrying her short distance is okay. We just can't carry for long distance or hold her in a line, it kills our backs.

I've suggested MaW to her mom. She wants to wait until Cheyenne is older and can decide for herself what she wants her wish to be. Right now she'd agree to anything that anyone said to her. I know they make allowances for different family situations, but if they go to DW as her wish, they want us to go also. Cheyenne was born while Amber was still in high school. She came to live with us while she was pregnant and hid the pregnancy until she was in labor. They now live next door and we are VERY close to Cheyenne. We've always been there to provide financial and emotional support to both of them and it just wouldn't be the same if we weren't there for an extra-special trip.

That's why we want to take her ourselves this year, in case we can't be there if she decides to do a trip sometime in the future. Amber and her boyfriend can't go this year. Neither one of them has any time left due to spending so much time in the hospital with Cheyenne. Now I'm just rambling!
Thanks, you're a great group of people!

, you are such a great person, and the love you have for both of them shows in your post

 

[OneLittleSpark]

Thanks for the extra tips. I haven't had to get a GAC before, so I'm not really sure what help they will be able to offer other than using a stroller as a wheelchair. She is very small for her age so carrying her short distance is okay. We just can't carry for long distance or hold her in a line, it kills our backs.

The GAC is basically a tool to quickly communicate your needs to the CMs. There isn't something they can do at every attraction, but they'll do what they can. It sounds like you would benefit from the stamps to allow you to wait out of the sun, where possible; and to sit at the front of shows.

You shouldn't have to carry her much, if at all. For one or two attractions you might need to do this to load and unload, but you will be able to take her stroller right up to most of the ride cars. For Peter Pan and TTA they cannot stop the moving walkways (except in emergencies), so you'd need to carry her onto these rides. A lot of the newer ride cars can accommodate wheelchairs, but you'd have to work out whether she would have a good view or not, as strollers tend to sit lower down than regular wheelchairs.

Does she have a medical stroller that is safe to tie down on buses? If not, and you're not going to have a car, you might want to consider renting a special needs stroller or pediatric wheelchair. That way, you will be able to have her stroller strapped down on the bus, and she'd be allowed to stay in it.

Whatever kind of stroller you're using, I strongly suggest you board the buses at the back, as us larger wheelchair users do. There is a marked waiting area for wheelchair users at most of the bus stops (there's not always one at the smaller resort stops) which you should wait in. When the bus arrives, catch the driver's attention, so he / she knows you need to use the back doors. They should let everyone off, then shut the front doors and come straight back to you. If they start letting people on at the front, one of you should go up front to let them know you're there (there are a lot of people around the bus stops at busy times, so they may have missed you). The driver will then get the ramp or lift ready to use, and show you how to load on. If you're tying down, they will flip up one of the banks of seats and show you where to park up; if you're not, you will be able to fold the stroller up and get seated before the crowds descend. Some people feel uncomfortable about using the lifts / ramps, but it really is the safest option for you, your GD and the other passengers.

I've suggested MaW to her mom. She wants to wait until Cheyenne is older and can decide for herself what she wants her wish to be. Right now she'd agree to anything that anyone said to her. I know they make allowances for different family situations, but if they go to DW as her wish, they want us to go also. Cheyenne was born while Amber was still in high school. She came to live with us while she was pregnant and hid the pregnancy until she was in labor. They now live next door and we are VERY close to Cheyenne. We've always been there to provide financial and emotional support to both of them and it just wouldn't be the same if we weren't there for an extra-special trip.

I can understand that; it sounds like a sensible plan to me! And I'm betting that even without the extra magic that the MaW fairies can weave, you will have a wonderful trip that all three of you will remember for a long time to come!

Where will you guys be staying? All of the Disney hotels are truly magical, and have wonderful CMs in them. If you're staying off site, there are loads of really nice places too, though if you're using their shuttles, you'll want to find out as much as possible about the buses' access before you go.