Sunday, February 22, 2015

A New Brace

Things have been fairly uneventful here the past few weeks where Jake is concerned, which is definitely a good thing! He is fully recovered from his cold and is getting around really well.

He got some new hardware a few weeks ago in the form of a full leg brace. A little history...while Jake was recovering in the hospital, his ankle muscles had not yet come back. He couldn't keep his foot at 90 degrees while walking since his toe tended to flop downward. His PT suggested we fit him for a brace. It was below the knee and in two pieces - a hard plastic piece that fit around his foot and a carbon fiber outer piece. The idea at the time was the carbon fiber would give him the spring he needed as his ankle came back to help him flex as he stepped.

Fast forward six months post-stroke to last January. His ankle muscles still hadn't returned but now he had the added issue of excessive tone. The tightness was causing his ankle to roll to the outside of his foot. He did six weeks of serial casting to try and increase range of motion for his ankle. Afterwards, he was fit for a new brace. It was a softer plastic around his foot and offered more support for the ankle (it's pictured on the right.)

Now here we are a year later. While his range of motion in the ankle continues to improve, he is still dealing with the excessive tone. He got botox back in October which helped quite a bit but wore off in about three months. While the ankle continues to roll to the outside, it's taking his knee with it. His PT has been very concerned about the pressure and stress this is putting on his knee and what that could mean down the road. If you've seen him walk, it's almost like his knee gives out a little as he takes a step and is pointed about 10-15 degrees to the left instead of straight ahead. She came up with the idea to put him in a full leg brace which is pictured on the left. It's pretty massive and goes high up on his thigh. It's got metal rods going down each side of the leg which force the knee to point straight ahead. The nice thing about this one is the top part can be removed and he is left with a brace very similar to what he had before below the knee. It offers a little more support for the outside ankle too.

He was excited about the idea of the brace since it was supposed to help him walk better. When we went to pick it up and he saw it, you could see the shock on his face. Neither of us quite realized how big the brace was going to be. He said to me in the car on the way home that he doesn't understand why his braces keep getting bigger, they should be getting smaller. In retrospect, I wonder the same thing, but there was no way to know at the time how long it would take his ankle to recover.  He was also really worried it was going to show under his pants and what it's going to look like when he wears shorts this summer. He got a lot of questions at the beginning of school about his brace and now figures he'll get more. Luckily it doesn't really show under his jeans so that made him feel a little better. The good thing is the brace seems to be helping, we've really noticed an improvement in his walking. Having his knee properly aligned caused him some pain those first few days, but that has gone away. The idea is that his leg will stay in proper alignment after some time due to muscle memory. At this point, we're just taking it one day at a time and are grateful he's got it.

Sunday, February 1, 2015

Jake's Going to See Rush!

So first, the big news...we found out about a week ago that Rush is touring again this summer, so Jake is finally going to get to see his favorite band in concert! For those of you who may not know, Jake and Todd had tickets to go back in August 2013. He was still in the hospital, couldn't go and was pretty bummed out. He also ended up having his second surgery that same day. (This picture is from when he was still in the hospital with all of his swag Rush send him thanks to Todd, Luke and several friends sending them letters about Jake's situation.)

We got tickets for Todd and the boys on Friday and Jake is already counting down the days. There is a big red circle on his calendar for July 11th and I think he said this morning it's 160 days away. :-) He's been trying to decide which Rush shirt he wants to wear and offered to lend Luke one "but only to borrow for the concert." I am so happy that Todd and the boys will get to experience this together. Its the first concert for both of them and I think it will be really memorable with how much impact Rush has had on Jake. Even now, it's his music of choice when he needs to zone out and relax. I still don't get how it's relaxing for him, but whatever works. As much as I would love to see Jake's reaction, the cost of the ticket would be completely wasted on me so I opted out and am letting it be a boys night out.

I think Jake has finally just about kicked his cold. He ended up using his wheelchair all last week at school and his classmates were really great about getting him where he needed to go.We were so pleased that it didn't end up being a huge negative for him. The only thing I felt bad about was the concern from two of Jake's teachers that something bad had happened to Jake. (He was out Thursday and Friday and then shows up on Monday in a wheelchair.) I had communicated with his case manager but didn't think to send an email to all of his teachers. It's so different in middle school...word doesn't get around quite as quickly. His walking is looking better this weekend which is so nice to see.

Looking forward to the week ahead...