Tuesday, November 23, 2010

Advice needed

Okay, special needs community! We could use some ideas.
Avery loves her walker. It gives her a wonderful sense of independence and allows her to run around with the other children and go wherever she wants to go. If not for her walker, she would have to sit in a stroller or crawl.
HOWEVER, it is terrible for her legs. Especially now that she is no longer wearing AFOs. I put arch support in her shoes, because otherwise the inside of her ankles would pretty much be on the floor. She really probably does most of the work with her arms and shoulders, supporting most of her weight on her hands and propelling herself with her feet. Her knees stay together as she steps, her heels are usually up off the ground the entire time. The result is that her walker is probably compounding and increasing the muscle tone problems, etc, and putting even more stress on her bones and joints.
She does not want to lose the independence of having her walker. Neither do we want to take it away from her. We have thought about getting a wheelchair for long distances, since she would still be able to propel herself using her hands, thus maintaining a level of independence. The problem with that is that she doesn't want a wheelchair. A couple of weeks ago she had a day out with daddy, and at one point they were at Chick Fil A, and she was in the play area talking to some other children. They were apparently asking her about her walker and why she needed it. Gabe said it was a pretty interesting conversation to listen in on. She told them that her legs weren't broken or anything, so she didn't need a wheelchair or anything, and she demonstrated by getting close to the play equipment, letting go of her walker and taking the couple of remaining steps to the equipment without her walker. Then she started crawling up saying that she had great legs for climbing. We still haven't ruled out the wheelchair option, but I want her to feel good about how she gets around.
Anyway, the point is that we've been trying to think of something to replace the walker. Something which will give her all the independence of the walker without compounding her muscle issues. Something which will give her stability. Something she can get into and out of easily. Something which would still allow her to be upright. I don't know that the perfect device exists, but I am hoping that maybe somebody out there will be able to point us in the right direction.


Anonymous said...

Have you looked at the kidwalk? That is what Miles had for awhile. It gives you as much or as little support as you want, but you do have one belt to unhook to get out of it.

Lisa said...

I'm afraid I don't know of anything, but Sherri's idea sounds like it might be perfect!

Laura said...

Josephine, I've put a comment on the family site. :)

Kristen said...

I wish I could point you in a direction but I am afraid I do not know of anything. The world of walkers is still so new to me. I wish you much luck in finding the right solution. I was imagining what you must be feeling in this situation and it certainly isn't easy!

Carla said...

While I don't have a suggestion (wish I did) I can point you to someone who would have a suggestion. Barbara over at Therextras probably can suggestion something for Avery.

Sarah said...

My daughter (with triparesis CP) just started using the Kidwalk and it is awesome. Of course, she probably has a bit more of a challenge than Avery not having a reliable left arm to hold on to a walker. It is a cool product and allows for a lot of freedom yet is supportive (but not TOO supportive like a pony walker, etc.)

As for the wheelchair - you'd have to deal with the psychology of it but from a practical point of view, I think it's not a bad idea for long distances. I know some see it as a "failure" or "giving up" to get a chair but in reality it can be a means to another end if you know what I mean.

Good luck!

Michelle said...

How about thw Snugseat Crocodile walker that has a fold down seat? Then she wouldn't be putting so much weight on her legs, still have the freedom, and she could stand if she wanted to. She also has the mobility to get in and out of that configuration on her own.