Anyone want to help me think through ECV/crutches + DAS + infant? Feeling overwhelmed ...

[TillyMarigold]

My kid spent a TON of mental energy on being "mostly OK" and running around right on the edge of a meltdown. Getting a DAS was really hard for them. Guest relations always seems to have a line. People they didn't know were looking at them. Making eye contact. Talking, in a room full of people who were also talking. It's noisy, chaotic and boring. If their choice was to go do THAT or keep being "mostly ok" they went for coping as best they could or just going back to the hotel room to decompress.

We found that getting the DAS first thing, on the first day, when they had as much reserves/coping skill as possible was the best answer. We could use the DAS or not based on how the day was going and what was coming up.

I'll also suggest dark sunglasses as an option for Pluto. The Florida sun can be mighty intense sensory input.

Thanks! That's a good point. I'll discuss that with him.

He generally doesn't have any visual sensory issues (mostly auditory avoider and tactile seeker, with a few tactile advoidance issues, and his biggest challenges are with proprioception and interoception), which is good, because sunglasses are something he Won't Do. Not entirely sure if it's sensory or regular boundary testing/asserting independence, but we'll take a hat for the sun and call it an option if he needs it.

 

[TillyMarigold]

God bless my father, who for some reason absolutely loves to drive people to the airport, and is going to come to my house (a bit over an hour away) and take us to the airport, and pick us up at the end of our trip.

 

[RoseGold]

Let me suggest a completely different plan. Rent a real wheelchair at home. I have a permanently disabled family member in a Whill Ci (now a Whill Ci2). They are rentable locally to me, so you don't have to walk 10 minutes to the SSR lobby. Get a spare battery, you'll need it. They have a zero turning radius and minimal learning curve. And they go so much faster than the huge rental scooters, the Disney-approved ones are limited in speed. You could get a cheaper rental, but get a wheelchair, not a scooter.

If you can stumble a few feet into a plane and onto a ride, maybe even with help, there are easy places to leave the wheelchair, on the plane and near the rides. Almost all the rides are wheelchair accessible in the queues, definitely not the case for huge rental scooters. Airplanes are used to transporting wheelchairs.

Then, the issue becomes transport from the airport with a wheelchair, which ME handles like a champ. MAKE SURE ITS REQUESTED ON THE ME. The rest of the transportation is MUCH easier in a legit wheelchair than a rental scooter. You just never get out of the chair, and your ankle is fine. You roll into Oga's, you roll into the restroom, you roll everywhere!

The hole in this plan is if you get a room with stairs at SSR, but that would be a problem with a scooter as well. the Whill locks in the app, so it's a brick. I'm not sure how that would work with the rental, but I assume the same.

I'm not clear why you are trying to be a hero here and use as little help as possible. There's no medal for this. Why struggle with all these transfers and crutches and stress your serious injury waiting in line for an hour? Just get a real wheelchair. DAS is there, sign up! It's for kids like your son. Don't use it if you don't want to, but I don't see why you wouldn't sign up.

 

[SueM in MN]

Let me suggest a completely different plan. Rent a real wheelchair at home. I have a permanently disabled family member in a Whill Ci (now a Whill Ci2). They are rentable locally to me, so you don't have to walk 10 minutes to the SSR lobby. Get a spare battery, you'll need it. They have a zero turning radius and minimal learning curve. And they go so much faster than the huge rental scooters, the Disney-approved ones are limited in speed. You could get a cheaper rental, but get a wheelchair, not a scooter.

If you can stumble a few feet into a plane and onto a ride, maybe even with help, there are easy places to leave the wheelchair, on the plane and near the rides. Almost all the rides are wheelchair accessible in the queues, definitely not the case for huge rental scooters. Airplanes are used to transporting wheelchairs.

Then, the issue becomes transport from the airport with a wheelchair, which ME handles like a champ. MAKE SURE ITS REQUESTED ON THE ME. The rest of the transportation is MUCH easier in a legit wheelchair than a rental scooter. You just never get out of the chair, and your ankle is fine. You roll into Oga's, you roll into the restroom, you roll everywhere!

The hole in this plan is if you get a room with stairs at SSR, but that would be a problem with a scooter as well. the Whill locks in the app, so it's a brick. I'm not sure how that would work with the rental, but I assume the same.

I'm not clear why you are trying to be a hero here and use as little help as possible. There's no medal for this. Why struggle with all these transfers and crutches and stress your serious injury waiting in line for an hour? Just get a real wheelchair. DAS is there, sign up! It's for kids like your son. Don't use it if you don't want to, but I don't see why you wouldn't sign up.

Wheelchair Rented at home
just make sure that transporting it by air is approved by the rental agency. It would be bad to have something happen to it and find out you are totally responsible.

Magical Express
if you can’t contact ME ahead of time, you can still get an accessible bus. It may just be a little longer wait.

SSR
SSR has elevators in each building, so if you are not assigned to 1st floor, you can still get to your room

 

[maxiesmom]

I just got back from my first trip to DW using a scooter. It was a vacation saver. I wouldn't ever use crutches at the park or a knee scooter. As another poster pointed out, there are no medals for suffering needlessly. Make things as easy on yourself as you can. The less pain you are in, the less tired you are, the more you can be there for your kids and husband.

The off site scooters you can rent are much smaller and easier to use than the Disney ones. Then you also will have it to use at your resort. I went thru Golds Mobility, as they have the best reviews.

 

[RoseGold]

SSR
SSR has elevators in each building, so if you are not assigned to 1st floor, you can still get to your room

My bad, I was thinking of the OKW elevator situation. Pretty silly that any “deluxe” hotel has this issue.

Ive taken the Whill on dozens flights, many of them Spirit. Airlines transport much heavier and more expensive wheelchairs all the time. I’ve never even seen a mark on mine. Be sure you know how to flip it into manual. On the Whill, it’s two clips on the bottom that can be tricky.

 

[TillyMarigold]

So, a few things going on here. The first is that, not being used to using a wheelchair, I would have a hard time pushing myself around for 8-10 miles. Chernabog could do it if Pluto pushed the stroller, but I'm not sure Pluto could push me through the queues. The second is that my doctor is very anti-wheelchair--he wants me to be moving under my own power as much as I can. The third is that "mostly riding but able to walk short distances with crutches" is the level of mobility I was given to expect would be realistic 3 weeks from now.

However, I just got back from the orthopedist, and there's been a slight change of plan. Rather than starting with touching the foot down and working up from there to FWB (meaning I'd be partially weight bearing at Disney), he put be in a walking cast and wants me FWB (or as close to it as possible) immediately with crutches only for balance, but working up in distance instead, e.g. today I stand on both legs, then I take a couple steps, then walk across the room, then into the next room, etc. The goal by Disney is to be able to be FWB and walk short distances without crutches. (Edit: that's not a Disney goal per se; the timing is coincidental. Three weeks from today, my doctor wants me FWB without crutches and walking short distances. It just happens to be the day before we leave.) I have another appointment the day before we leave to (if all goes well) change from a walking cast to a boot, and again, FWB without crutches on the boot. I am considering whether I should bring at least one crutch or maybe a cane, but we'll see how it goes for the next couple weeks. (Doctor said no, but doctor may have a higher opinion of my physical fitness than I do.)

 

[TillyMarigold]

By the way, I may not have been clear about the knee scooter. Using it in the parks for any significant distance is not in the cards. I was thinking more about the airport, the hotel room, maybe even a little bit of moving around SSR, but not all day in the parks. Basically, I was going to take it with me to Disney but keep it in the room and use the scooter to go to the parks.

Also, I canceled my reservation with Scooterbug and rented from Gold instead.

 

[maxiesmom]

I wish you the best of luck. Good one on renting the scooter. I was just at WDW and saw a couple of people walking with boots on. It looked miserable. And this is coming from someone who has sprained both ankles badly and been on crutches a few times. Spent 10 of the last 12 months on them.

 

[DVCjj]

Holy Toledo I'm shocked you're even thinking about going and not postponing the trip.

I broke an ankle a few years ago in a million pieces and enough hardware to build a bomb shelter.
I cancelled My DW trip (bawled my eyes out) and ended up going about 6 months later and even then had to constantly stop and ice in every park and in the room all night. Throbbing all the time. I should have waited til 8 months.

AND that was no baby and children. I'm in awe and shock you are going.

 

[Kjdisney]

After spending 8 weeks in a walking boot, my best advice is to make sure you order an Even Up. You can get it from Amazon and is for the shoe foot. My daughter is a physical Therapist and she told me to get one after complaining of the hip pain with the boot.
It made walking almost normal, and I don’t know why the boot manufacturers don’t just include it in with the boot. None of my running shoes were high enough to be even with the boot, and without the Even Up I felt really off balance as well as developing the hip pain.

 

[Starwind]

After spending 8 weeks in a walking boot, my best advice is to make sure you order an Even Up. You can get it from Amazon and is for the shoe foot. My daughter is a physical Therapist and she told me to get one after complaining of the hip pain with the boot.
It made walking almost normal, and I don’t know why the boot manufacturers don’t just include it in with the boot. None of my running shoes were high enough to be even with the boot, and without the Even Up I felt really off balance as well as developing the hip pain.

I second this. The Even Up is amazing and makes a massive difference.

 

[dawnball]

I second this. The Even Up is amazing and makes a massive difference.

The Even Up, and if you're doing a lot of walking, a roll/pack of friction tape. Walking boots wear out FAST, and a worn down bottom is pretty slippery. The friction tape both prolonged the life of the boot sole and meant that I didn't slip on wet surfaces.

 

[Starwind]

The Even Up, and if you're doing a lot of walking, a roll/pack of friction tape. Walking boots wear out FAST, and a worn down bottom is pretty slippery. The friction tape both prolonged the life of the boot sole and meant that I didn't slip on wet surfaces.

Also at least a second "sock" to wear for the booted foot. The sock you wear in them gets very stinky and really needs to be washed after each use. Having at least two socks, especially while traveling, gives you a bit of flexibility and may mean not having to do that laundry each night. Also, if one just gets too wet, you can swap it out with a nice dry one.

There are also rain covers for walking boots. they won't waterproof it - water from things like puddles are still a problem - but are a great help from things like rain or snow coming down from the sky.

SW

 

[TillyMarigold]

I'm wearing the Even Up right now and adding friction tape to the packing list! And socks for under the boot to my shopping list. I can't believe I hadn't thought of rain, too--Jack Jack just finished wearing an orthotic helmet and I knew how careful we needed to be about getting it wet, but somehow the fact that the boot is the same didn't register.

 

[TillyMarigold]

Holy Toledo I'm shocked you're even thinking about going and not postponing the trip.

I broke an ankle a few years ago in a million pieces and enough hardware to build a bomb shelter.
I cancelled My DW trip (bawled my eyes out) and ended up going about 6 months later and even then had to constantly stop and ice in every park and in the room all night. Throbbing all the time. I should have waited til 8 months.

AND that was no baby and children. I'm in awe and shock you are going.

I may well be insane, but unfortunately we're renting points and our trip insurance wouldn't cover enough of what we'd paid to make it possible to do a anything like this long/nice of a trip later. Also it's kind of been my lifeline through a lot of stuff (pandemic-related and not) that all I have to do is make it to the end of October and I'll get to go to Disney World.

Were you using a scooter? I mean, I'm sure I'll still need to rest/ice at night, but my orthopedist says my goals for the trip are realistic, and he's been dead on about everything else so far.

 

[RoseGold]

You’re talking about walking short distances, but that isn’t really what getting a scooter is. It’s parking the scooter down by the carousel and walking back over to Pooh and then standing around for 30 minutes with nowhere to sit. If you have a rental scooter (as opposed to a wheelchair), it won’t fit in the queue. Well, I think it does fit in Pooh, but you know what I mean. A wheelchair goes up to the ride vehicle pretty much anywhere. They park it at the ride exit, and you’re back in it a few minutes later.

Id have a serious discussion with your doctor about whether you should be standing around half the day and walking the sometimes significant distances to scooter parking. Scooter parking for dining, for the restroom. A wheelchair makes a significant difference in the time on your feet. Even if the Pooh line isn’t much distance, it’s still standing around for 30 minutes and every ride is figuring out where to park and what to do. They’re supposed to put you in Disney wheelchairs after you park your scooter at some rides, ugh. I’d just start with a wheelchair.

A motorized wheelchair takes the pressure off, (almost) always fits in the queue, and you’re the packhorse for all your kids, which is convenient for everyone. To me, an injury this serious wouldn’t be worth risking with a half-solution like a scooter.

 

[yoopermom]

I had a "worst of the worst" ankle breaks five years ago this Christmas, with three surgeries total on it (and am waiting on an ankle replacement, oh boy). Honestly, at the point you're at in your healing, I give you all the credit in the world for even trying it, I don't think I could have.

If I were you I would plan out "doomsday scenarios" and how you would handle them. Plan for the worst and hope for the best! Bring pain meds with at all different levels of strength, and don't let the pain get away from you (if they make you nauseous, bring snacks). Take compression socks for both feet and plan on wearing them. Figure out how you can ice and elevate (above your heart, remember), both in your hotel room and at the parks (first aid?). Wearing a boot is hard on the rest of the body orthopedically, especially for any distance. I would, personally, be renting an ECV and just using the boot/crutches for v short distances. Make sure you have the on call number for your ortho, and contact for local urgent care, pharmacy, etc. Keep hydrated! Have extra pillows for the bed, etc.

I had some PTSD from my incident, but did *not* want anyone near, much less bumping, my foot even after it was healing. Talk to your husband about how you will handle lines, stores, other tight places, getting on and off of rides, etc. It's SO easy to jar it!

Best of luck to you!

 

[TillyMarigold]

You’re talking about walking short distances, but that isn’t really what getting a scooter is. It’s parking the scooter down by the carousel and walking back over to Pooh and then standing around for 30 minutes with nowhere to sit. If you have a rental scooter (as opposed to a wheelchair), it won’t fit in the queue. Well, I think it does fit in Pooh, but you know what I mean. A wheelchair goes up to the ride vehicle pretty much anywhere. They park it at the ride exit, and you’re back in it a few minutes later.

Id have a serious discussion with your doctor about whether you should be standing around half the day and walking the sometimes significant distances to scooter parking. Scooter parking for dining, for the restroom. A wheelchair makes a significant difference in the time on your feet. Even if the Pooh line isn’t much distance, it’s still standing around for 30 minutes and every ride is figuring out where to park and what to do. They’re supposed to put you in Disney wheelchairs after you park your scooter at some rides, ugh. I’d just start with a wheelchair.

A motorized wheelchair takes the pressure off, (almost) always fits in the queue, and you’re the packhorse for all your kids, which is convenient for everyone. To me, an injury this serious wouldn’t be worth risking with a half-solution like a scooter.

Oh yeah, definitely scootering through queues or using a WDW wheelchair transfer if necessary! No way would I try to stand that long. Walking is more for dining and the restroom, and depending on circumstances, will likely scooter as close as I can and have DH park/retrieve it for me.

I have a friend whose (adult) daughter has hip dysplasia and uses a power chair most of the time, but rented a scooter (instead) while at Disney last month. She has similar mobility to what I expect to have during my trip, so I am mostly modeling my plans on her experience there.

I had a "worst of the worst" ankle breaks five years ago this Christmas, with three surgeries total on it (and am waiting on an ankle replacement, oh boy). Honestly, at the point you're at in your healing, I give you all the credit in the world for even trying it, I don't think I could have.

If I were you I would plan out "doomsday scenarios" and how you would handle them. Plan for the worst and hope for the best! Bring pain meds with at all different levels of strength, and don't let the pain get away from you (if they make you nauseous, bring snacks). Take compression socks for both feet and plan on wearing them. Figure out how you can ice and elevate (above your heart, remember), both in your hotel room and at the parks (first aid?). Wearing a boot is hard on the rest of the body orthopedically, especially for any distance. I would, personally, be renting an ECV and just using the boot/crutches for v short distances. Make sure you have the on call number for your ortho, and contact for local urgent care, pharmacy, etc. Keep hydrated! Have extra pillows for the bed, etc.

I had some PTSD from my incident, but did *not* want anyone near, much less bumping, my foot even after it was healing. Talk to your husband about how you will handle lines, stores, other tight places, getting on and off of rides, etc. It's SO easy to jar it!

Best of luck to you!

Thanks, and best of luck to you also.

As of now (9.5 weeks after the break, 7.5 weeks after surgery, 2.5 weeks before the trip), two of the breaks are healed (both in the tibia) but the fibula and ligament have quite a ways to go. I'm not taking anything but occasional Tylenol right now but I'll talk to the doctor about something stronger to take on the trip. That's the only non-prescription thing I'm allowed to take. Very good point about making sure I have numbers for urgent care and pharmacy and I will work on my in-the-parks elevation/ice strategy.

I am planning to do just what you said--renting an ECV and using it as much as possible. Walking only for restrooms, or if I need to park outside a restaurant, and not standing for any length of time. I do have compression socks and extra boot liners (even though I don't have my boot yet!) and an Even-Up. It's going to be tricky to go from walking cast to boot the day before the trip, but given the walking cast is a gigantic pain in the neck (it's a regular fiberglass cast with extra layers and a shoe that straps on), hopefully the boot won't be *more* awkward.

 

[TillyMarigold]

Now, given new info about walking without crutches (though so far I can only stand without them), I'm wondering if I should still take them on the trip just in case. Or take a cane. I'm terrible with the crutches but maybe it would be useful to have a cane in case my ankle is feeling overworked?

Thank y'all for all your help and for being my sounding board and my place to keep all my notes in one place.