12yo in foot cast, wheelchair questions

[tmfranlk]

Hi all,

I've been reading the FAQs and searching for relevant threads and I think I've got most of the information I need, but just wanted to double check a few things.

My 12DD has to have surgery for flat feet this year. She'll do the first foot soon and the second foot in the fall. We're scheduled to do 2 weeks at WDW in mid-November. If the expected schedule holds she'll be nearing the end of the cast after her second surgery, but will still have a foot cast.

Please feel free to correct anything I've got wrong here or suggest alternatives...

1. I fully know the difference between mobility needs and DAS so no confusion there

2. Wheelchair - I am planning to rent a wheelchair off site for the duration of our stay

3. Wheelchair size - I am planning to rent a standard (18"?) size wheelchair because she'll need to share the seat with my 4yo DD at times. I know it's not ideal, but for 10 days of the trip it will just be me and the girls.

4. Wheelchair seat padding - How can I make the wheelchair seat more comfortable?

5. Casts - If I'm understanding everything correctly her cast won't prevent her from any rides (assuming it's a below the knee cast, which it should be)

6. Jedi Training Academy - This is the last year she's eligible for Jedi Training Academy and the first time her sister can participate too and that her dad will get to see it. Can she still participate?

7. What else should I be thinking about? - What am I forgetting to prepare for? We know that we'll be working with the limitations and are prepared for that. (After two trips last year where I ended up in an ECV at WDW due to a diverticulitis attack and again at DL because I was post that surgery we're familiar with the new pace.) However this surgery has come up so suddenly that she really doesn't want to lose our trip to it also.

Thank you all!

 

[seashoreCM]

While a cast may be designed for walking, one should walk on it as little as possible unless directed otherwise by the doctor.

Which means DD12 must not get up and walk for the purpose of giving DD4 a fair share of the time riding in the wheelchair.

Be prepared to stop and rest if DD4 gets antsy for having to walk long distance (or if you need to rest).

 

[tmfranlk]

Agreed. DD12 will not get up and walk. The 4yo will sit next to her when needed.

 

[SueM in MN]

Hi all,

I've been reading the FAQs and searching for relevant threads and I think I've got most of the information I need, but just wanted to double check a few things.

My 12DD has to have surgery for flat feet this year. She'll do the first foot soon and the second foot in the fall. We're scheduled to do 2 weeks at WDW in mid-November. If the expected schedule holds she'll be nearing the end of the cast after her second surgery, but will still have a foot cast.

Please feel free to correct anything I've got wrong here or suggest alternatives...

1. I fully know the difference between mobility needs and DAS so no confusion there

2. Wheelchair - I am planning to rent a wheelchair off site for the duration of our stay

3. Wheelchair size - I am planning to rent a standard (18"?) size wheelchair because she'll need to share the seat with my 4yo DD at times. I know it's not ideal, but for 10 days of the trip it will just be me and the girls.

Standard size is 18-20 inches wide (depending on who you rent from. It may be hard to push with 2 kids riding and depending on your daughters' sizes, they may both sort of sink to the middle of the sling seat and end up partly sitting on each other.
Check on the height of the footrests and whether the can be adjusted so her foot is supported and not just hanging.

4. Wheelchair seat padding - How can I make the wheelchair seat more comfortable?

a lot of people just do a pillow.

5. Casts - If I'm understanding everything correctly her cast won't prevent her from any rides (assuming it's a below the knee cast, which it should be)

there are 3 things you need to be ambulatory for and Peter Pan, you need to walk at least a bit.
Peter Pan - or at least able to walk from wheelchair to boarding. The moving walkway can't be slowed or stopped, so you need to move fairly quickly.

Swiss Family Robinson Treehouse - many steep and narrow stairs

Tomorrowland Transit Authority - steep moving ramp, like an escalator without steps to get up to the 2nd floor boarding area, a moving walkway and down a steep moving walkway to exit.

Tom Sawyer's Island - the raft to get over is accessible, but many areas have stairs, narrow areas or things like tires or log bridges.

6. Jedi Training Academy - This is the last year she's eligible for Jedi Training Academy and the first time her sister can participate too and that her dad will get to see it. Can she still participate?

I have seen video of kids in wheelchairs participating. They should be able to do it.
Here's a link to a thread about Jedi Training using a wheelchair. The question was about a child on a Make a Wish trip, but most of the answer would still be the same.
http://www.disboards.com/threads/jedi-training-and-child-in-wheelchair.3349776/

7. What else should I be thinking about? - What am I forgetting to prepare for? We know that we'll be working with the limitations and are prepared for that. (After two trips last year where I ended up in an ECV at WDW due to a diverticulitis attack and again at DL because I was post that surgery we're familiar with the new pace.) However this surgery has come up so suddenly that she really doesn't want to lose our trip to it also.

Thank you all!

prepare to be more tired because of the pushing. Touring with an ECV is similar because you have to watch out, be aware of where things like curb cuts and ramps are.
The biggest differences will be in the pushing part.
All attractions are accessible by wheelchair to the point of boarding (except for the couple I mentioned above). That is a bit different than ECV, where in some attractions you need to switch from the ECV to a wheelchair.

 

[tmfranlk]

Thank you, Sue. I've already decided that I had better start working out my arms and upper body for all of the pushing. With the foot issues I've already pushed them both in a double Maclaren until DD12 was almost 10, but almost 13 mean I've got a lot bigger kid. As I work out I'll just envision the hill to Fantasmic and my need to make it up that!

Before the surgery news came up we'd already figured out how to extend our trip to a full two weeks. I'm thankful for that right now as we'll have the time we need to just take it slow and work our way through all that we want to do. We'll do the thrill rides DD4 doesn't like in the 4 days DH is along and then just enjoy the slower pace the rest of the trip. We always do a lot of shows, characters, parades, street performances, etc so we'll be happy with whatever we can accomplish.

 

[Glittercat]

4. Wheelchair seat padding - How can I make the wheelchair seat more comfortable?

Often I'm in my wheelchair for about 16 hours at a stretch (with seated breaks out of it as well). I've tried a bunch of cushions and in the heat, those with a gel top are my most favorites! They really are better at cooling you down than the foam version.
Sounds like you've got a good idea how pushing will go, and ways to prep for it!

For your daughter athletic skirts, sports, or shorts that wick moisture away from the skin may be helpful. It gets hot in a chair, sweaty and sweltering. I also carry a small backpack on my chair with a bottle of water, change of clothes for dinner (or wet rides depending), baby wipes, mini toiletry kit, and a small hand towel.

Hope her surgery is a great success, and your vacation magical!

 

[minnie mum]

Just a couple of other things. I don't need a lot of padding, but I do use a folded beach towel to put on the seat. Just a bit of a barrier between me and that plastic mesh. It's cooler and moisture absorbing.

For you: buy a pair of gloves to protect your hands and prevent blisters. I bought DH a pair of the gloves weight lifters use- fingerless, with padded palms. He found them extremely helpful.

 

[Glittercat]

Just a couple of other things. I don't need a lot of padding, but I do use a folded beach towel to put on the seat. Just a bit of a barrier between me and that plastic mesh. It's cooler and moisture absorbing.

For you: buy a pair of gloves to protect your hands and prevent blisters. I bought DH a pair of the gloves weight lifters use- fingerless, with padded palms. He found them extremely helpful.

Really and you find you get enough support from the beach towel? Interesting, I'll give it a go! My bones dislocate and hurt if I'm on the boney bits too long.

Oh yes good point! Gloves are a necessity, and also a spare pair is a good idea as those suckers are easily lost.

 

[minnie mum]

Really and you find you get enough support from the beach towel? Interesting, I'll give it a go! My bones dislocate and hurt if I'm on the boney bits too long.
.

No, I would absolutely not recommend just a towel for any one who is in a chair full time. But I had the impression that the OPs daughter was able to stand, perhaps walk a few steps, and could easily shift her weight when in the chair.

 

[Betty Rohrer]

I would second the gloves for the pusher to prevent blisters

 

[SueM in MN]

No, I would absolutely not recommend just a towel for any one who is in a chair full time. But I had the impression that the OPs daughter was able to stand, perhaps walk a few steps, and could easily shift her weight when in the chair.

That was my impression also, along with sometimes having 2 children in the chair. Those 2 things would make a towel a good choice.
My youngest DD is in s wheelchair full time because she can't walk at all (except in s gait trainer that totally holds her up). She has a special (and very expensive) gel seat, but that is overkill for people who are able to get up, move around and shift position.

I would second the gloves for the pusher to prevent blisters

We have never used gloves, but we have also been pushing a wheelchair for many years.
Some people find the gloves are too hot in the summer and make their hands too sweaty, even with no fingers. If you think they help, but they feel too hot, try alternating having them on and and then off for a while.

Another thing to think about - if wearing shorts, the person in the wheelchair needs sunscreen on their legs. That's not normally a part that is 'pointed' toward the sun, but when sitting in a wheelchair, the thighs and knees are right out there and can get burned easily and quickly.

 

[Glittercat]

No, I would absolutely not recommend just a towel for any one who is in a chair full time. But I had the impression that the OPs daughter was able to stand, perhaps walk a few steps, and could easily shift her weight when in the chair.

Sorry I misunderstood, and thank you for clarifying. I'm easily muddled these days lol. Also, in the search for a decent cushion all options must be explored. You are totally correct though if she can walk a bit, and ride some a beach towel is a very good idea.

She has a special (and very expensive) gel seat, but that is overkill for people who are able to get up, move around and shift position.

This makes perfect sense.

Some people find the gloves are too hot in the summer and make their hands too sweaty, even with no fingers. If you think they help, but they feel too hot, try alternating having them on and and then off for a while.

True. Your hands get ridiculously sweaty, but without the gloves blisters can easily put a damper on the vacation. If she's not going to self propel then gloves would be useless. I keep two pairs with me as one is always damp from something (sweat, water rides, rain) and give my skin hands a breather whenever we stop for long amounts of time or in restaurants.

Another thing to think about - if wearing shorts, the person in the wheelchair needs sunscreen on their legs. That's not normally a part that is 'pointed' toward the sun, but when sitting in a wheelchair, the thighs and knees are right out there and can get burned easily and quickly.

Good point! I forget this every stinking year!

 

[piccolopat]

Is there anyway to change the timing of the second schedule? Your DD won't be able to go in the pool with the cast and it will just be easier all around if she didn't have to deal with it while on vacation. If it were my DD, I would postpone the surgery until after the trip.

 

[tmfranlk]

Thank you everyone! I'll look into some gloves since I'll be pushing full-time and am not used to that. I'd hate to add blisters to everything else we're already doing.

Yes. This would just be a temporary wheelchair need while she's recovering.

We have a 2nd opinion appointment with Shriner's on the 1st so I'll know more about the recovery timelines after that. It's possible that we may postpone the 2nd surgery until after the trip, but may not decide that until after the first and she gets a chance to see what the recovery process is like. Right now, the surgery schedule and the trip staying as is are based solely on DD's desires. All timelines are in her hands right now as it's the best way to work with her anxieties and help her cope with this major step. As we get into it, we'll see what changes need to be made. Right now I just don't think she grasps it all.

Swimming I'm not too worried about though. We're going in late Nov/early Dec and don't plan to swim anyway.

 

[mamabunny]

Our daughter (she's *21* now... :::sob::: you can't stop them from growing up!) spent her first 3 years in casts, and the next 15 years going to Shriner's Hospital, until her 18th birthday. Lots of surgery on her feet, lots of casts and braces... so I understand.

First, use that initial round of surgery as a learning curve - because the reality afterwards is always different than you imagine it will be. But, it's great practice for the second surgery! You'll be much more prepared the second time around, and knowing what to expect will actually make it easier.

Next, buy yourself (and anyone else who will be pushing her) a pair of bike gloves. It will help protect your hands on the handlebars of the wheelchair. The worst thing in the world is to get blisters from pushing a wheelchair at WDW. I made that mistake once, and then never again!

Most kids can get by with a pillow in the seat, especially if they won't be in the chair all day. If she has some other orthopedic issue, then you could consider an inexpensive gel or memory foam cushion. For fun, buy an inexpensive Disney-themed beach towel this summer to make a cover for it! You don't even have to sew - just wrap the beach towel around the pillow or cushion

Ask your insurance company if they will help pay for the rental of the chair - especially given that there will be two surgeries. Many insurance plans have a "DME" (Durable Medical Equipment) option, and you work with the insurance company to have whatever is required post-surgery (for rehab or mobility purposes) delivered.

Regardless of whether you rent the chair, or your insurance company helps, consider bringing the chair from your hometown if you are flying. Remember that there can be an insane amount of walking at the airports. The airlines will fold the chair at the gate, and put it under the plane with the strollers, and gate-checked baggage. They will bring it back to you at the destination gate.

Last, but certainly not least, please make sure that she knows that LOTS of people go to WDW every year in wheelchairs, and they still have ALL the fun they want to have!!!

 

[tinka-belle]

Though it would add a little height, a kitchen chair cushion with ties for the back of the chair would make a world of difference if sitting for long periods, can usually find them at WalMart or similar stores. Go for the thicker ones to be comfortable. Since they tie on you can adjust them a bit for the seat. You know the kind I mean, the ones your grandmother might have used on her wooden kitchen chairs.

Also at WalMart, adult bicycle gloves are not too expensive, a lot less than the sports stores or bike shops. Gloves definitely DO make a difference.

If you rent a chair from home bring a few bungee cords to wrap it at the airport for gate check, keeps it nice and compact and less likely to catch on something in the baggage hold of the plane.

 

[clanmcculloch]

I've never used gloves for pushing Dd14's chair around WDW. It's one of the few places she uses one so it's not like I have calouses from pushing one all the time. Of course we also don't do long days so that could make a difference.

Bring tall kitchen trash bags. If it starts raining they fit perfectly over the cast and they're disposable and take up very little room in your park bag.

If it's a removable boot type cast, bring ziploc bage to fill with ice for instant ice packs. When stopped for a break (waiting for a parade, meal or snack time, etc.) You can fill the ziploc anywhere that has ice and remove the boot to ice her down if needed. Obviously check with the doctor that this would be ok.

 

[tmfranlk]

Thank you all! I appreciate all of the continued advice. It's really helping me. I didn't even think about checking with insurance on the wheelchair.

 

[SueM in MN]

I think you said she was getting her surgery at Shriners?

I know the Shriners by us has wheelchairs to lend out. So check on that. If not, the Social Worker or Care Manager should be able to help you to get one.

 

[Glittercat]

Thank you everyone! I'll look into some gloves since I'll be pushing full-time and am not used to that. I'd hate to add blisters to everything else we're already doing.

Oh I was being confusing again, I'm sorry. *brain fog* I don't know if you'll need gloves, but your daughter would if she were to push/roll herself.

We have a 2nd opinion appointment with Shriner's on the 1st so I'll know more about the recovery timelines after that.

All of my operations were done at Shriner's too. I was with them from ages 8-18.

It's possible that we may postpone the 2nd surgery until after the trip, but may not decide that until after the first and she gets a chance to see what the recovery process is like. Right now, the surgery schedule and the trip staying as is are based solely on DD's desires. All timelines are in her hands right now as it's the best way to work with her anxieties and help her cope with this major step. As we get into it, we'll see what changes need to be made. Right now I just don't think she grasps it all.

Has she ever had surgery before? If she has then odds are she has a pretty sound idea what to expect- if she never has then maybe she needs a bit more information about what to expect and a conversation about pain levels during recovery.

First, use that initial round of surgery as a learning curve - because the reality afterwards is always different than you imagine it will be. But, it's great practice for the second surgery! You'll be much more prepared the second time around, and knowing what to expect will actually make it easier.

*wise woman above!* @mamabunny

Ask your insurance company if they will help pay for the rental of the chair - especially given that there will be two surgeries.

Though it was many years ago Shriner's let us borrow the a chair sometimes.

Regardless of whether you rent the chair, or your insurance company helps, consider bringing the chair from your hometown if you are flying. Remember that there can be an insane amount of walking at the airports. The airlines will fold the chair at the gate, and put it under the plane with the strollers, and gate-checked baggage. They will bring it back to you at the destination gate.

I agree 100% airports are tough on crutches- doable but there is so much walking. I did them this way many times, that is not an option anymore and the past many years I've used my own chair. Also if you do bring a chair, and check it they will have you wheel her down to the plane, and then take the tagged chair from there, if she can't walk on her own they have an aisle chair to push her in. It is a narrow wheelchair, that she will have to be strapped into not terrific but it does help some.

Last, but certainly not least, please make sure that she knows that LOTS of people go to WDW every year in wheelchairs, and they still have ALL the fun they want to have!!!

ever so true!

I think you said she was getting her surgery at Shriners?

I know the Shriners by us has wheelchairs to lend out. So check on that. If not, the Social Worker or Care Manager should be able to help you to get one.

What she said. lol