Summer Break

Even though school got out six weeks ago, we are finally starting our summer break and not a minute too soon. The past six weeks have been full of no less than 15 hours a week of therapy/appointments (including drive time) and we are all whooped.

Jake had his annual post-stroke appointments, gait lab analysis, and botox all down at Children's Hospital. He's also had several sessions of  OT, stretch, neuro-feedback, and a couple sessions of PT. Add in there a few trips to the chiropractor and getting his braces off (that was one he was very excited about!). And finally this past Thursday we went down to Penrose Hospital in Colorado Springs for his driving evaluation.

It's so hard to find balance in the summer. It's such a great opportunity to fit in extra therapies, but we also recognize the need for down time. I tried really hard to have a few days a week where we didn't have any appointments, but that meant doubling and tripling up on other days.  He was almost in tears a few weeks ago talking about losing another summer to appointments due to his stroke, so we decided to cancel everything for the last month of summer before school starts and give him a full break.

A couple of these appointments were biggies - the gait lab analysis and the driving evaluation. Since he had surgery on his foot last summer and has been in pretty intensive PT for the better part of a year, they wanted to re-evaluate his gait. We have obviously seen the improvement, but it was nice to get the official report that the surgery was definitely a success and they are really pleased with the outcome. It was pretty remarkable to see how much better he walked barefoot without his brace this time compared to last. When we went over a year ago, he could hardly put any weight on his left foot and he had this very painful looking hop shuffle he did while walking. This time he was able to put weight on the left foot and is much closer to spending equal time on each foot when walking. The only real concern now is that he doesn't get his left knee entirely straight when walking, it stays flexed at about 20%. They've suggested a new brace to see if it will help.

Due to some of the lingering issues from his stroke, he had to get a driving evaluation prior to being allowed to get his drivers permit in December. While it's still several months away, we wanted to do it this summer so he could start the 30 hours of required driver's ed training without trying to fit it in during school. Our two biggest concerns were his loss of vision (he has no vision on the left half of both eyes) and general response time. I was really impressed at how well he did on several of the items they evaluated him on, especially since he has no prior driving skills to draw on. They did have some concerns with his vision, which really wasn't a surprise. They suggested some vision therapy to help with scanning and it's just going to take more work to teach him how to accommodate when he's driving. They gave him the go ahead to move forward with the permit. Yea! He'll have to go back once he has his permit to do some additional work in a car to see what, if any, adaptations need to be made. It was a good day! I was so afraid they were going to tell him no and he'd have to wait until he was older which would have been a horrible blow.

We have managed to find time to fit in some fun stuff too...trips to the pool, a couple of long bike rides (he has a goal to do a 10 mile ride before summer is over), rock climbing, bowling, Elitches, lots of time on his drums, and hanging out with the neighbor kids. This last month of summer, we're looking forward to some day outings, a jam session with friends, a weekend in Glenwood Springs, many more days at the pool and lots of bike rides.

The Last Four Years

I can't believe it's already been four years since life as we knew it completely got flipped upside down.  It was May 31, 2013 that our sweet Jake came in complaining of a headache and three hours later he was having emergency brain surgery. When I think back to those first hours there are some details I remember so clearly, I will never forget them. There are others that I only remember because they were written here on the blog. I spent an evening a couple months ago going back and reading everything from the beginning. It was pretty overwhelming...he was in such bad shape.

On the flip side I have the joy of seeing where he is today, now 14 and a good half a head taller than me. As I think about the last four years, one thing really stands out. Jake's drive and determination hasn't wavered. He worked so hard to get better in the hospital, hours and hours of therapy every day. He had a goal to be able to walk out of the hospital when he was discharged and he did. He has done things over the past few years that I honestly wasn't sure he'd be able to do and it's been very inspiring to watch him push himself and try things. He has become so disciplined about his home exercise program and stretching. He now makes notes of what he needs to do in his phone and then just does it on his own. All of his appointments, OT, PT, stretching, acupuncture and neuro-feedback continue to be a pretty big part of his life and probably will be for some time. It's something we've gotten used to and it's just part of what we do, just like other families spend a lot of time on sports, we go to a lot of appointments. I'm extremely grateful we have so many great resources and therapists in his life. They have really become friends and trusted advisers, not to mention how much they have helped ease the affects of his muscle tightness with his grow spurts.

And to top everything off - we are now of the verge of having a high schooler! Jake finished 8th grade last Thursday and will be heading to high school in the fall - crazy. All I know is, time is going by way too fast.

Snowboarding

If you have followed the blog for awhile, you may remember we tried to take Jake snowboarding about 8 months after his stroke and things didn't go quite as planned (you can read that post here). It's something I've really wanted him to try again since he enjoyed it so much pre-stroke. We started talking about it again after Christmas and he decided he was ready. I called around to several ski areas that offer adaptive lessons and we decided on Eldora. It's kinda funny we ended up there since it's the first place we took the boys when they first started skiing/snowboarding and were really pleased with the lessons back then. At the time, I had no idea they had an adaptive program but I was really impressed with their concern and interest in how they could best help Jake when I talked to them on the phone. 

We went up on Thursday since the boys were off school. I asked Jake how he was feeling the night before and he said he was both excited and nervous. I have to admit I had similar feelings. I was excited and hopeful things would go well but had that tiny little bit of doubt they might not.

I'm happy to report that the lesson went great! He had two amazing instructors who worked really hard with him to teach some of the fundamentals of how to work with his weaker leg and gave him the opportunity to do a little bit of snowboarding too. They started on a really small hill and within an hour went over to the bigger training hill. Watching him having fun and being able to go a little way on his own filled my heart with so much joy. Here is about a one minute video clip if you want to see it - snowboarding.

The other super cool thing was Luke. I really wanted him to be able to enjoy the day too, so he and Todd went skiing during Jake's lesson. They would come to check in off and on and see how things were going. He was so supportive and excited to see Jake doing well. He didn't complain that he was missing out on ski time or that he and Todd had to walk quite a ways (in ski boots) to come check on Jake. Made me so proud of both of them. We're going to go up one more time over spring break, can't wait! 

How it is already 2017?

Time really needs to slow down, that or I need to stop being so busy. Here were are again, two months since I posted. Yikes.

Jake had his 4 month post op appointment in mid-November and his surgeon was really pleased with his healing and progress. All Jake's therapy and work at home has really made a big difference in his walking. The doctor mentioned we could look into changing his leg brace again to something less supportive and more flexible. Talk about full circle...it's the same kind of brace he was given when he was discharged from the hospital. It's made of carbon fiber, fairly narrow on the back of the calf, but it's real benefit is the little bit of spring it gives when stepping from heel to toe. So we've gone from carbon fiber to more rigid and supportive to very supportive full leg to surgery to rigid and supportive  and back to lower profile. We're hoping to get him fit for the new brace in the next month or so since we're tweaking a few other things and don't want to change too many things at once.

We've recently discovered Jake's left leg is about a 1/2" shorter than his right and could be affecting some of his gait pattern. It's a pretty common thing, but when your gait and walking are under a microscope, one tends to pick up on things that would be normal nuisances for someone else. We're trying a small lift in his left shoe to see if helps even things out a bit.

With all the focus on Jake's foot/leg post surgery, we got off schedule with botox for his arm. We normally go every three months and didn't make it in for six months. His bicep had gotten really tight and we noticed the dexterity in his left hand wasn't as good. He got botox back in December and is now in 8 weeks of OT to see if we can't get things working a bit better. He doesn't seem to be responding to the botox as well as he has in the past, but I'm hoping it will just take some time and exercises to loosen things back up.

We're making time to fit in some fun stuff too around all the therapy appointments and went rock climbing yesterday. Jake needed a little support while bouldering (free climbing with the ropes), he did a really good job using his left leg and was trying to use his left arm. It's a good thing the wall wasn't any higher or Todd couldn't have reached!