A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Friday, November 22, 2013

Orthotics and ...

It is that time of year again.
Orthotics time.
And you can tell that Nick is starting to outgrow his orthotics. He is growing taller and so they aren't fitting as well.

The plan had been for his KAFO to only be temporary. That was the plan, and we all know how that works.
A quick little chat with physio, turned into a couple of 30 minute phone calls.

And the decision to keep the KAFO on the left leg

We have a new PT, she is the school age physiotherapist, so she has only met Nick in September, and she sees him during school hours, without me there.

I've been talking with her about orthotics, wanting to figure out what we are doing and when we will be getting fitted.

I talked about my concerns about keeping the KAFO, are we giving him too much support that will prevent him from gaining that support himself? Or does he need the extra support, and if he needs it then I don't want to say no because of ....
Because of what?
My idea and wishes for what I want for him? That I want him to have less support, that I want him to need less support. And just because I want him to need less support, doesn't mean that he doesn't need that support.
Or that having a KAFO is really pain in the butt, with pants and skin breakdown and heat.
Or that I really don't want to do something that could prevent him gaining strength.

So I am deferring to the professional, the physiotherapist. She thinks that the KAFO is needed, so that is what we will get.

Except that wasn't it all.
This past week when I was talking with her she mentioned that his right leg has been turning in. Turning almost all the way around by the end of the day.

His right leg has always been the good one.
And now it is turning in.

Turning in, that simple little phrase, that subtle sign that I'm supposed to watch out for.
Or is he just tired and its normal?

While PT talked about maybe considering a KAFO for the right leg, all I could think about was tethered cord. It's not supposed to do that. It is not supposed to go backwards. Function in the right leg is good and strong.
If all of a sudden he starts to need 2 KAFOs is there something else going on? I did ask the dreaded TC questions, she doesn't think it is tethered cord, but she is not a neurosurgeon. And my worse-case-scenario brain jumps there.
Or is it just simply activity. School is busy, he does a lot of walking in his walker, is it just simply that he is tired and doesn't pay as much attention to his leg. Or even that his AFO is too small to maximize what he needs.

I am not sure.

I'm going to ask his neurosurgeon. The specialist who will be able to tell me if I should be worried or not. Because I am trying really hard not to be worried, not to think about surgery, and handing my child over to a surgeon, all for a little twisted foot.

So I started talking about orthotics. We are going to go with the AFO-KFO combination, and see if there is something we can add to an AFO to give it more support at the end of the day. Kind of a mix

All of this and I still don't have a design yet!

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