Help Narrowing Down Style of Wheelchair

[Ainsley's Mom]

I know many of you have pediatric wheelchairs or pushchairs. I'm looking for some advice from people who've been there. We are at a key point where Ainsley has outgrown the stroller we've been using. She's 3 1/2 and is about 40lb and 40" tall. She has cerebellar hypoplasia and though we are trying to get her to walk we don't know if she'll be able or have much endurance. Or if she'll have the endurance to propel a wheelchair around for more than a short while (As you know she had hip surgery and is in a standard wheelchair right now and to our surprise she was able to propel it which kind of changes things.) She already has an Otto Bock posterior walker, so that's covered.

We'd been planning on getting a pushchair but then her PT (who barely knows her and I don't have a ton of confidence in) started talking power chairs. That might be necessary down the road (she may not have the strength or endurance to navigate a standard chair) but I'm not sure she has the cognitive ability to navigate a power chair right now or if we have the space for that to be practical. I read an old post where Roberta said do NOT get a power chair if the child isn't able to use it. But I've heard insurance will pay for one chair every 5 years so I am afraid she'll need a power chair in a couple years and we'll be stuck if we get a standard or push chair now. Maybe I just don't want to think she needs a power chair but really it would be smart? Here are my thoughts:

• It would be nice if she could push the chair herself at times so she's not just "stuck" or out in public when crawling isn't a great idea, think mall, park or zoo
• It is important that we be able to throw it into the trunk of the car.
• Our house doesn't really have the space for navigating a power chair
• At some point it may need to be safe for bus transportation to school if it becomes too difficult to carry her into the bus
• It would be nice to have a stroller style basket for storing "stuff" (suction)
• It would be nice to have a tray to put her AAC on (communication device)
• It would be great to have the tilt in space feature (sleeping & diaper changes or long trips with the big kids)

There are SO many options or different ways to go. Any thoughts? TIA!

[Livi's_mama]

http://www.adaptivemall.com/sptoeiopuch.html

We've had this a yr now. Not only does it recline in any position you want it...the leg space can go up or down too. It has a sun canopy and an underneath basket.

Our diaper bag is a messenger bag and we hang it across the handle which also goes in many positions. Suction straps on the side.


It's not bus ready though.


We got a grant through our electric coop that paid for this so that we didn't have to use our insurance since we may need something more "medical" in the next few yrs.

This should last us for awhile though.


(also have a small car, Ford Fusion and it fits in my trunk fine)

[CCHSMOM]

Originally Posted by Ainsley's Mom

• It would be nice if she could push the chair herself at times so she's not just "stuck" or out in public when crawling isn't a great idea, think mall, park or zoo
• It is important that we be able to throw it into the trunk of the car.
• Our house doesn't really have the space for navigating a power chair
• At some point it may need to be safe for bus transportation to school if it becomes too difficult to carry her into the bus
• It would be nice to have a stroller style basket for storing "stuff" (suction)
• It would be nice to have a tray to put her AAC on (communication device)
• It would be great to have the tilt in space feature (sleeping & diaper changes or long trips with the big kids)

There are SO many options or different ways to go. Any thoughts?

Susan,

We just went through this process, so I understand how frustrating it can be! Fortunately, my daughter's PT is really experienced, and knew which features we had to have. So, we looked at those options first, which narrowed down our chair choices to all of two. Then, we picked from those two, the one that had the most of our "wish list" features (we ended up ordering the Convaid Transport Safari Tilt w/optional recline. Looking at your list of features, I only know of one chair that fits most of them - Convaid's Convertible: http://www.adaptivemall.com/conconbustra.html It has interchangeable wheels, and comes with both stroller & wheelchair wheels; it is fold-able; the transport version comes crash-tested with tie-downs; there is an optional storage bag available (but not an under-the-seat basket); it has an optional clear plastic tray that would hold Ainsley's AAC device; it comes in a variety of colors; and it has a bunch of optional positioning aids, but it only has 10 degrees of tilt.

The other thing I would suggest is having Ainsley evaluated by a PT at Children's that really knows all the equipment choices, can measure her properly, and decide what positioning aids she needs. Good luck! I hope you find just the right chair for Ainsley.

[Louise D]

Getting a wheel chair for your child is like buying a new car. Look around at the options see whats out there and HOPE you get it right!. We have been told that you cant get everything you want in one chair, (I hate that)
We did not choose the chair Angelo has now, he came with it. He has a ZIPPIE made by QUICKIE. It has served us well. HE got it when he was 2 1/2, he is now 8. It has "GROWN' with him, replacing the front fork, seating system, and wheels. It is small enough to use in the house and at school. He can push himself, but also has tall handles so we can push too. It is a love hate relationship. Its either keep it low so they are on the same level as peers, (cant sit at the dinner table) want it sturdy (weighs a ton) want a tray under the seat to hold the suction bag (wont fold) want a tray to use at school (cant push himself with the tray on) .
We are also starting to look for a new chair. Power vs manual, more sporty, lighter for him to push.

All i have to say is make sure you do your homework, and make a list of what is MOST important to you.

Louise D

[Katelyns.mom]

Katelyn tried a power chair at school when she was about 4 or 5 y/o. It was so awesome to see her doing it herself!! A few things we had to think about.
How would we transport it?? We would have to get a special van or load it in the back of DH's pick up. So then does it stay at school where she has the most room to practice??
When she is tired or sick and can't do it then we are stuck... try and push big heavy chair or go back to the old wheelchair/stroller.
Most kid carts (or special stroller) and wheelchairs are going to come with a tray option.
The special stroller is going to be cheaper and will probably be better of off roading in parks and rough terrain. They do make them that have tie down attachments for bus transportation but she may out grow it before being bus time. A stroller will also fold better for the trunk of your car. I think some people/kids see theses nice special strollers as still being a "baby" stroller rather than a "big girl" chair.
One thing you might think about... is let the insurance pay for a power chair and see if you can find a used stroller. You can order all kinds of custom pieces for a chair if a used on isn't the exact fit.
This is a lot of info but you can messages me if you have any questions.

[Ann]

Power versus manual chair is a tough call because giving a child independence and a say in where they want to go is so important. But, if a child doesn't have the ability to use the power chair purposefully, a power chair can be a real pain. They don't fold up and they are hard to transport if you don't have a wheelchair accessible van. You should be able to get a loaner power chair to use for a while to see if it's the way to go for Ainsley. It's really a team effort and you need a good PT and a good wheelchair representative. At St. Louis Children's they have a wheelchair specialists as part of their neuromuscular team who helps find the right chair for kids with neuromuscular diseases. You might want to check with one of Ainsley's docs (orthopaedic maybe?) to see if there is a team at your Children's hospital that can help you.

Good luck.

[Melissa]

http://www.adaptivemall.com/saftilbus16.html

This is the chair we have and it does not feature the self propel wheels nor does it have a basket. It is sturdy and it has an awesome tilt system which allows Aly to be almost completely laid out. That has been very helpful for us since her illness last year.

It folds to a workable size but still takes up quite a bit of room in the trunk. I have a soft seating system for her as she is bony and tiny. It's some inflatable thing her PT/OT team found to be best for her. They did a pressure mapping thing on her to decide what seating system would be best. Because of that I have to take each seat piece out to fold, but I think without that it will fold by removing just the seat pad. It is authorized for use in vehicles as well based on the model chosen.

It would be awesome if it also allowed for the wheels so she could push herself around. Anyway, those are my two cents. This chair works great for us. Best of luck!

[Ainsley's Mom]

Originally Posted by Livi's_mama

http://www.adaptivemall.com/sptoeiopuch.html

We've had this a yr now. Not only does it recline in any position you want it...the leg space can go up or down too. It has a sun canopy and an underneath basket.

Our diaper bag is a messenger bag and we hang it across the handle which also goes in many positions. Suction straps on the side.


It's not bus ready though.


We got a grant through our electric coop that paid for this so that we didn't have to use our insurance since we may need something more "medical" in the next few yrs.

This should last us for awhile though.


(also have a small car, Ford Fusion and it fits in my trunk fine)

Trish, I've looked at that one several times and compared it to the Maclaren Major which we've also considered if we go the pushchair route. Is the Tomato pretty well built and IYO will last awhile? It's a bummer that they aren't approved for transport but I guess that's why that style of chair costs less. Ainsley can climb stairs with assistance, so maybe she'll get better at that and eliminate that requirement soon. She actually already takes the bus 4 days a week. Before the current wheelchair her nurses carried her on. It's a little awkward, and back breaking especially dangerous when it's icey.

***********************************************
I'm thinking that after reading all your replies (Thank you SO much!) I've come up with a pretty good plan. Ainsley will be able to try walking again in July. I think by the end of the summer I'll have a better idea if the hip surgery did anything to help her walk or not. I'll ask the PT if they have a power chair they can try at school and also a smaller wheelchair (the one she has is too big because it has to fit the spica cast). It may be too late for this year. It will depend on what the brace is like, she gets the cast off on Tuesday but will be in a brace until the end of the school year. In the mean time I'll ask for a referral for an evaluation at Children's (I trust them more). If we truly can't make the stroller work then we'll buy an inexpensive pushchair (Maclaren or Tomato) to buy us some time.

I think what some of you said is "right on", there is no such thing as the perfect chair, and we might need more than one. Even if a power chair is the right choice in the long run, I think it's a little early yet for many reasons but it's good to start educating myself on the options now since it takes awhile to get the chair once you've narrowed it down. THANKS!!!

[WeAdoptKids]

Let me say that you can get a new chair sooner if Anisley's need change. It really is unreal what all they can change around and flip around to get what you need for less.

That being said, I still say that I would never get a power chair unless your child can use a power chair. A test run for a few weeks is the way to go on that one.

While you can put them in manualdrive and then you can push, they are so heavy it is a killer. If Mordachi's dies at school, he must use his manual chair. HE hates that, but it help himto remember to plug it in at the end of the day.

Good Luck, this is a fun time for sure.

Roberta

[hogansteph]

This is so ironic...we were just to the neurodevelemental pediatrician ( I am sure I slaughtered that spelling) on Friday and they brought up the need for starting to think about a power chair for Keyan. I was completely caught off guard! I hadn't even begun to think in that direction. At first, I was actually thinking about it because of the whole independance thing. I certainly don't want to hold her back! Than, while we were at the farmer's market yesterday, we used her stroller type wheelchair and I had an apifiny....I sort of invisioned her using a power chair and getting her "freedom"....what a disaster!!!! In that sea of people, I realized that while I crave for her to be able to do things more herself, there is no way in he** (pardon me but that is what I thought) that SHE is cognativly strong enough to power her own chair...what in the world was I thinking???? A child who can not follow a two step command, is not ready to be that independant! Wishful thinking yes, but absolutely, she is not ready for that!
We are fortunate that we don't have to make a decision now because we have the convaid cruiser that she can stay in until she is 75 pounds and it is bus approved. We switched our suction bag to a diaper bag with stroller clips, so it clips to the handles. It works fairly well. Keyan is able to walk but doesn't have the endurance for longer trips so we use it only when we are out, but it gets alot of use. I transport the kids myself to school though and I was not looking forward to lugging it in and out everyday at school, so this year, she has used a wagon while at school. That may change for kindergarden. We got it three years ago and besides it being cllunky to get into the van, we have been very happy.
So, I say all that to say...it makes me feel not so alone when I read your post and saw that someone else in this big world is dealing with the same stuff we are! Thanks so much!