At the fair, she had a lot of walking to do. Day after day. And she did not want to be a baby and sit in the stroller. And she is too heavy for us to carry much. By lunch she was DONE. By dinner, she was often in tears because her body was so tired...then continued those tears as we made her sit in the stroller.
I talked with Miss Jenna, her pt about this. She said it sounded like it might be time to get Miss Callie a wheelchair. The idea did not sit well with me. She talked about all the reasons that she thought it was a good idea, preserving her body, allowing her independent mobility without getting over tired. Preventing that 'over exhausted' state by giving her another option. Giving her the ability to more easily move herself to an area she wants to see and explore, where she can then get out of the chair, so that she can enjoy being out in the community more.
I just didn't (and still don't!) like the idea. At all.
But I also understand the alternative. I understand the risk she posses to herself when she is so far beyond exhaustion that she falls with each. and. every. step. I understand how poor the quality of her movement is when she is that tired, and that alone puts her at a higher risk. I get that she is not having fun when she is that tired. But a wheelchair? Really? a wheelchair? Isn't she too high functioning for a wheelchair?
I spent a week wrestling with this before I agreed to let her try one. It only took 2 days for Jenna's wheelchair dealer to locate one for Callie to try.
Much to my dismay...she LOVED it from the start, and still does (2 weeks later). Here are pictures of her first contact with the wheelchair.
It took her all of about 1 1/2 minutes to figure out how to go forward, backward, and turn in both directions.
And we have used this every day since we got it for gait training. It turns out, that it really is much easier for her to use. She is able to go at a normal walking speed - she can keep up with us, her family. She is also able to go longer/further without getting too tired, though if she does get too tired, we can push her in it as well.
As I said, I have used this for her everyday for gait training. It has helped her to not be too tired by the time we make it to our building in downtown Seattle for gait training...so she can use her energy on improving her gait. Then afterward, she is so very tired, that it is the difference between carrying her out and letting her get back to the car by herself - which is very important to her!
I still do not like the idea of her in a wheelchair. It still feels like defeat. It feels like on some level, I am giving up on her walking...and it is certainly motivation for me to really work hard on her therapy over this 4 month session! And I certainly understand the threat of overusing it and her muscles in her legs atrophying, and the concern that we may NEVER get her back if that happens...I am slowing getting past the feeling that a part of me is dying when I see her in the chair. I am slowing getting over the concern I have for how other people perceive her in the chair. I am slowly getting over my fear of the chair and all that it means...and it is all by the grace of God.
(All of her siblings think the chair is pretty cool. It took Justice all of about 45 seconds to be popping wheelies in it, lol!)