Tuesday, May 13, 2014

New boots

My boy loves all that is cowboy, so we affectionately call his leg braces boots. I figured it would make it more fun and less medical. 

We've been through quite a few pairs. 

This pair is new and different. I have struggled with this pair. 

He hasn't visibly regressed. He still is doing good with his physical therapist and his ataxia and balance are still the same (not horrible, but not good). 

He still severely hyper extends his knees and after some conversations with the orthopedics expert (Jason at Hope Orthotics) our PT (Ms. Laurie) and us we decided to try a boot that offers Will more support. It felt like a huge step backwards. 

I remember when we got Will's first pair, I thought oh ok, fine, he'll wear these for a few months and then we won't need them anymore. My sister and I had talked about renting a beach house the following summer and I thought by then he'll be wearing crocs like his cousins and running down the beach. (That memory is part of my "ignorant bliss" stage in this medical journey). 

Anyways... these boots go up higher on his leg, has a wedge on the bottom and a hinge in the back. It takes away some of his ability to move around easier but it gives him more support to catch his balance. 

He's had these since Easter. We had to buy some tall socks so that took a while to arrive, then we had to ease into wearing them. Then we had to go back and get padding put in and make some adjustments. They kept pinching his skin behind his knee and his legs were just a hot mess of bruises, near blisters and red marks. 

We finally got it all sorted out and for the first time he started wearing them all day this week. 

It's taken him some getting used to. He was having some rather large falls at school because they make him use his quad muscle, a muscle that he hasn't previously put to much use. 

The goal is that by giving him more support and making him activate his quads, it will help him to stop hyper extending his knees and be safer while walking.

I actually had, what is likely one of my grand delusions, that once we get his quad muscles going maybe he can go back to just ankle level boots and one day boot-less. Not high on the list of priorities in my prayers, but still a nice fleeting thought. 

For now, I've just realized how happy I am to be slightly less worried about his core stability and him twisting his knees. I've traded those worries for other ones... 

Silly selfies while we wait

He did a good job being patient while his boots were adjusted so we played in the germ filled play room. 

1 comment:

  1. Lori, reading "I've traded those worries for other ones..." hit me in the gut. A worrier by nature, I relate. I make wishes all the time that some of that worry can be alleviated for you. So easy to go down the road of made up stories that haven't happened yet. I'm a pro at it. Will is such a champion. It was great seeing you, Neil, and Will today at the PK graduation lunch. I expected it to get emotional but it mostly wasn't for me. Phew. Parent night was way harder for me. Our kinder guys! Whoa. Will was so cute making faces at Vincent and being silly. Love your guy to pieces.