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!

Thursday, December 13, 2012

Brace yourself!

 I have been waiting for months to get Nick's new braces. And the day finally came to pick them up!
I was disappointed with the design on the last braces that I wanted to be very specific about our next ones.
I wasn't there when they were fitted, but I sent Kyle with very specific instructions. And talked to the orthodics guy multiple times. It still wasn't exactly what I wanted. But it is close enough
I had a number of different pirate options for Nickolas to look at - and of course he picked pirate Mickey!
What I wanted was for the picture to be wrapped around the entire AFO so there wouldn't be any brace showing, but I think there was concern about the picture becoming fuzzy, or they didn't get what I mean. But this is what we have.
Nick loves it - so that is the important part!
These braces are special, we are trying something new.
Something that is going to help and I'm excited to see what the help will do. And that excitement is trying to stomp all over the feeling I have in the pit of my stomach.
So let me explain.
See how Nickolas is standing in this picture.
See that left knee of his bending in.
It's been doing this for a while and we tried a couple of things in the summer in see what helps. I thought I had blogged about, but apparently I didn't.
it is only the left side that is showing this weakness. And needed the support. We tried twister cables - or made up twister cables. But it didn't do what we wanted it to - and I think they have to go over the clothes which is not what we wanted.
So the next step was a KAFO. Which means Knee-Ankle-Foot-Orthodics. This provides support at the ankle, but also at the knee. And also prevent that knee from turning in. And will make it stronger. It will still let him bend his knee and move, but with more support.
Some of the stomach feelings were the picture in my head of Forest Gump and his metal braces, but also that it feels like we are going backwards. That I want to take away the bracing, not build it up.
But that is not how spina bifida works. And I know this deep down. As Nick gets older his gets heavier and taller and more active and he will s how us what is needed - and he is showing us he needs a KAFO on the left side.

So today was the day!
We decided to go with Grandview - which is local - for orthodics this time. They run clinics on Thursdays and our PT comes to the clinic as well, so I felt comfortable doing this here instead of through Bloorview. And apparently they are all made at the same place anyways.

So here it is...

The metal is still a little scary looking, and I'm not sure how his skin will tolerate it. But the top part is made with softer ?plastic? that should be ok against his skin.
And it's definately bulkier.

Kyle and Nickolas got to play while they were working on some adjustments

Then it was time for a trial to see how he walked with them.
And we discovered that since Nickolas is standing up straighter, he needed his walker height increased as well (for the second time in 2 months)
Never noticed how much he was bending down and leaning forward...

And then we were off!
(The whole trip lasted 45 minutes)

Of course I wanted to take some pictures of Nick standing up straight ...
(maybe a little too straight)

We had to get Nick some new pants that aren't so tight over the KAFO, and of course new shoes and new winter boots (actually found some with minimal difficulty - at Walmart)

Nick doesn't seem to mind them (so far)

During potty time he was telling me he wanted them off, but I think that was just becuase his legs were exposed and he coukld see there was something there.
But he was starting to feel more comfortable standing and testing being hands free - so he must be feeling more stable with them.

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