Three Year Anniversary

On the eve of Jake's three year anniversary of his stroke, I have a hard time believing three years have already passed. There are things I can remember about that night like it was yesterday. Others I don't remember at all until I go back and read them here. He has come so far since May 31, 2013...

I was going through some pictures the other day looking for something from his 4th grade year and started going through all the video and pictures we took in the hospital. More than one tear streamed down my cheek, he was in such bad shape. I have people ask me how we got through those three months in the hospital and it was literally one day at a time. I do remember making a very conscious effort to focus on what was happening that day and forcing myself to not get overwhelmed with all the "what next?, what if's?" that would pop into my head. There were so many unknowns and the only way to not make myself crazy was to celebrate the small victories each day and not worry about what was coming tomorrow, next week, next month, next year.

This past year has presented some new challenges in his recovery. The biggest being his growth spurt. I've talked about this off and on and the impact it's had on his walking. When I think back to last July when he was starting to walk more and more without his leg brace and how well he was doing, the difference is pretty shocking. The botox isn't lasting as long or is as effective which brought us to take him to the Gait Lab at Children's a few weeks ago. Tuesday Todd and I will meet with the doctors and PT's to go over the results and discuss the options of where to go from here. I have a feeling I know what's going to be recommended and it's not going to be an easy road...I'll share the outcome of our meeting in the next blog.

Jake finished 7th grade on Friday. A couple of weeks  ago he was chosen to receive an award at the annual middle school awards night. (You may remember he got recognized for band last year at the same ceremony.) This year, he was honored for his efforts in Math. It was kind of funny, after the ceremony, he said to me "I'm not sure why I got the award for Math, it's not my best subject." I explained to him that the award wasn't about who has the best grades but about how hard you try and the effort you put in. I talked to his teacher a few days later and she told me that he consistently participates in class as well as group work and just doesn't give up. I truly believe his persistence is a big part of why he's come as far as he has in his recovery.

All in all, it's been a good year. Jake has continued to make progress albeit a bit slower, but we're told that's normal. I tried to cut back on the support I was giving him with homework and staying on top of things. There were still times that assignments didn't get handed in or he needed reminding to check in with teachers, but from what I hear from some of my friends, that's typical for a 13 year old boy. :-) We still encounter new obstacles every so often, but seem to find ways to overcome them. I think this next year present a whole new set of challenges...it will be his last year of middle school and decisions will need to be made about high school. I also suspect his growth spurts will continue to hinder his overall muscle tone.

Bottom line, we are so incredibly proud of him and feel very blessed.

Gait Lab

Jake had his appointment for his gait analysis on Wednesday. It was a really long appointment and he was exhausted by the time we were done. While he spends time outside of his leg brace on a daily basis, it's for pretty limited amounts of time, and this was the most he's had to walk without it.

On Wednesday, he had to do several laps back and forth so his walking pattern and muscles could be measured. He had a pretty lengthy exam where we talked about different things we've done for treatment, then they took measurements and checked the bending/flexibility of his knees and ankles. After that, the hard work for him really began. Due to to the significant difference in his walking with and without the brace, they decided to film him both ways. He had reflectors attached all over his legs and on his hips, they bounced off lights in the room and were captured on film. He also had electrodes on several points on legs which measured what the muscles were doing. We were told this is the same technology used in producing animation in films. If you watch the video below, about half way through you'll see how much his left foot rolls out to the side and how he can't get it flat. He doesn't do the traditional heel then toe walk with that foot that most of us do. (Sorry for the choppy edits, he had to be shirtless due to the hip reflectors and I was trying to just focus on his legs).

The final piece was a very thin wire was inserted into his calf muscle so they could get even more precise measurements of how his muscle is reacting when he walks. He wasn't a huge fan of that, but was a trooper.

The team that will meet to go over the results will include his PT, rehab doctor, orthopedic doctor and the PT who did the analysis will review all the data to make a recommendation on what to do moving forward. We won't hear back for a few weeks but are very hopeful we'll get direction on how to best help him.

A Hectic May

I feel so lucky on this Mother’s Day to have been blessed with two amazing boys. I truly couldn’t ask for better kids, we’ll see if that sentiment holds as we head into teenager years. :-)

We got an early start to summer fun this past Thursday when we joined Adaptive Adventures at Chatfield Reservoir with some kayaking, sailing and rock climbing. It was one of those bittersweet moments watching Jake on the rock wall. He was trying so hard to propel himself up the wall but he just didn’t have the strength in his left arm to pull him up. One of their volunteers got on the wall to help him...it was so impressive at how good she was at giving him extra support while hanging on the wall herself so he could keep going. While this is happening, Luke went up and down three different sections of the wall. Seeing how easily he was able to do it while watching Jake struggle so hard to just get up one section was one of those gut wrenching moments. I hated that it had to be so hard for Jake, but at the same time being so proud of him for continuing to persevere and make it to the top. We are really looking forward to doing more with them this summer.

In addition to our normal day to day stuff, Jake has a lot going on the next month. This coming Wednesday, he is going to the Gait Lab at Children’s Hospital. I talked about this a few posts ago when we were in the process of trying to get a referral. I am hopeful that we will get some really good information from this so we can figure out if there is a better way to help his walking. We won’t get their findings for a few weeks, but I’ll post an update next weekend on how the lab itself goes.

He's also has his first overnight camping trip next weekend with boy scouts, along with Todd and Luke. The following week he is getting an award at the middle school awards night. Last year he was chosen as outstanding band member for 6th grade which was such a cool thing for him. We don’t know what he is getting this time but I’ll be sure to let you know when we find out. Then he finishes 7th grade at the end of the month and has his 3rd year anniversary post stroke on May 31st. So hard to believe it's been three years... 

Finally, and probably the one I am most proud of, Jake is going to summer camp at Roundup River Ranch on June 8th! We went last fall for the family weekend and had such a great time. Ever since, I have been hoping he would go to the kid’s only version this summer. We’ve talked about it off and on over the past several months, but he’s really been on the fence if he wanted to attend. He got accepted about a week ago and told us Friday night he wants to go. His independence took a huge step backwards after his stroke, and for him to decide he’s ready to go away by himself for 6 days is a HUGE step. His only overnights without us in the past three years have been with very good friends or my mom and dad. The camp session he's attending is for kids with a neurological disorder, so I’m hoping he can finally get the chance to connect with some other kids who might be dealing with similar issues. As with most summer camps, there is no communication, so it’s going to be really hard on me, but I know it’s going to be so good for him. The staff is trained to deal with kids who have medical issues and he really couldn’t be at a better place to get the support he needs while away. If only they had that same kind of support for the parents who are at home. :-)