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!

Geez, it's been awhile!

Life's been a bit busy in the Morgan household which has contributed to my lack of updates. Jake is now two months post cast and still plugging away. He's now walking full time and done using the knee scooter. He's had a few setbacks...at times it feels like two steps forward one step back with his recovery, but at least he's still moving forward. The last couple months, he's had some unexplained hip and knee pain at different times. Fortunately the pain goes away on its own within a week or so but it does tend to slow down his therapy a bit. He's been going to PT twice a week and that will continue at least through the end of November when he's re-evaluated.

The one thing that has been really exciting to see is how straight and stable his left leg is. He can now get his foot completely flat when he walks and it's really made a huge difference. Another issue we have noticed recently is with his right foot. It tends to roll in and wobble a little when he walks. So in addition to rehab on the left side he's also got work to do on the right side.

Last week we headed to Roundup River Ranch for family weekend. This is the same camp Jake attended for a week this past summer. It is so hard to put into words the environment they are able to create there. It's probably one of the most supportive, positive and uplifting places I've ever been. It's a very busy, fun-filled weekend, I just wish it lasted longer. Being part of the neurological weekend there is such a wide variety of diagnoses. While the root cause may be different, the struggles and issues we all deal with are very similar. It's nice to be able to talk to people who "walk your walk."

We packed a lot of fun into a very short amount of time - fishing (both the boys each caught 3 fish), rock climbing, zip lining, horseback riding, painting, games, and dancing. I think my favorite part of the weekend is getting to do it together as a family. I am so grateful we had the opportunity to be a part of something so amazing.

Discover Scuba

It's now been three weeks since Jake got his cast removed. He's still got some swelling but his foot has finally stopped hurting as much and he's walking on it more and more. He started PT a few weeks ago, but it's been pretty gentle and more stretching in nature due to his foot pain. This week starts the twice a week sessions which he'll continue for several months. It's pretty cool to see how much flatter and straighter his foot/leg already is when he walks, even before the intensive therapy has started.

Despite being in the early phases of healing from surgery, he got the opportunity to attend a discover scuba class at Denver Divers last weekend through Adaptive Adventures. Since his brace is plastic, it can easily go in the water, so there was really no reason not to go. We were so impressed with the instructor, he had a very calm, soothing manner that Jake responded really well to. He told Jake they would go at his pace and if he didn't want to leave the the underwater ledge on this first outing that was totally fine. It

didn't end up being an issue. Within an hour, Jake was swimming back and forth along the bottom of the pool and we had a hard time getting him out of the water. He really enjoyed it and we're looking into what would be involved in getting him certified. Due to the weakness on his left side, he would not have a typical independent certification but would instead be evaluated for how much support he would need in an open water dive, most likely an instructor and a buddy (which Todd wants to get certified for). We're really excited to have another possible sport that we could all do as a family. I see a whole new area of gift ideas for upcoming birthday and Christmas. :-)

No More Cast

Jake got his cast off on Friday! I have to say,this past six weeks went by much faster than I thought it would and things were so much easier once he got his walking cast. While he wasn't walking on it full-time (he was using a knee scooter to get around most of the time) just being able to take some steps and put weight on that leg made such a huge difference. We were in Breckenridge with my extended family a few weeks ago to celebrate my Mom and Dad's 70th birthdays and he was getting around surprisingly well on the scooter...playing croquet, sitting by the camp fire, and with the help of an water-tight cast cover he was even able to get in the hot tub.

He started school on the 9th and I was pretty concerned about him being able to navigate through the halls on the scooter. While he had started walking more on his cast at home, getting around a large middle school was a whole different story. We went in and did a trial run with the knee scooter and he's managed really great. It's been a little tiring,  I think his shear determination to be somewhat independent and not need a wheelchair has kept him going.

After he got his cast removed on Friday morning, we went to pick up his new leg brace. I knew he was going back to a shorter brace, but was pleasantly surprised at how much smaller it really was. All of the braces he's had during the past three years had an extra foot piece for added support  to help keep his ankle straight (you can see it in the picture of the brace on the left). The new one is one continuous piece of plastic that supports the back of his leg and goes down under the foot like an L. Being all black it's a little hard to see it in the picture, but we are thrilled that he needs less bracing and it's so much easier to put on. He has to wear it 24/7 except for showering during the next three months to keep his foot in the correct alignment. He's been walking some around the house this weekend, and we're already noticing a better gait pattern. As expected, his leg is pretty weak and his foot gets sore easily. It will take some time before he's back to walking full time and doesn't need the knee scooter. His doctor was really pleased with his healing so far. Rehab therapy starts on Monday which I know will really help in his recovery. I am so excited to see how he continues to process and I will be sure to keep you posted.