Two Years...

Today is two years since Jake had an aneurysm burst in his brain leading him and our family down a very unplanned path. Looking back it's really hard to believe it's already been two years, this past year has gone by especially fast. The doctors initially told Jake it would take a year to heal. I don't know what they determined "healed" to be, but I am really thankful he didn't stop his recovery at the one year mark since he's made some huge strides this past year.

On this second anniversary, I wasn't nearly as emotional as I was last year. I didn't find myself thinking about the events of that evening on May 31, 2013 as certain times passed on the clock. I was watching him play outside this afternoon and am pretty amazed at how far he's come. The kids had a lemonade stand and were up and down the street several times getting supplies. There is no way he could have done that a year ago. Today, I am going to focus on and celebrate all the progress Jake has made in this past year instead of dwelling on the things that are still a struggle.

Jake's transition to middle school went better than I could have ever hoped for. Yes, there were a few bumps along the way, but as he's just a few days from finishing 6th grade I'd have to count this year as a success. His independence grew as well as his self advocacy.

His walking has continued to improve and he is actually starting to run a little for short distances. There was only one time the entire year that he needed his wheelchair at school and that is because he got sick.

His stamina and endurance have really improved. We were so concerned about him getting around the middle school because it was so big and he did get tired earlier in the year. Now, it's really not a big deal. A year ago, we used his wheelchair consistently when going places like Costco or Target and now he doesn't need it. He can also be outside for several hours at a time hanging out with friends without getting overly tired. We also avoided doing certain activities because we were worried it would be too tiring, not so much anymore.

We're beginning to step back, not hover and watch over him quite as much. So much of his life has been under a microscope since this all happened and at times it was hard to just let him be. We were at a friends BBQ recently and he was out of our sight for huge chunks of time. It felt a little odd and good all at the same time to not go check and see how he was doing, but he didn't need us to. He was just hanging with the other kids. So many things he's going through now are normal for a 12 year old boy and have nothing to do with his aneurysm/stroke. Hearing some of those things was a big eye opener for us at his IEP meeting about a month ago.

Jake and Luke's relationship is continuing to evolve and change. I've caught a few moments of Jake stepping back into the big brother role which always warms my heart.

Jake is getting a little less fearful and more willing to try things. He and our daredevil Luke are still miles apart, but it's good to see him stepping out of his comfort zone.

Jake has grown this year in so many ways, there are countless little things that I didn't mention. Some of them are recovery related and some are just growing up, but both are good to see. We will continue help him in every way we can with therapies, support and space when he needs it to figure things out on his own. We are so thankful and feel very blessed that he has come as far as he has and can't wait to see what the next year brings. Thank you to all of you who continue to follow Jake's progress offering your love, prayers and support.

Music Glove

Jake started some new more engaging therapy a few weeks ago that we are hoping helps improve his fine motor skills on his left hand. Over the past several months, we've seen him try to use his left hand more and more doing things like opening the car door or holding his water bottle with his left hand and opening it with his right. He does pretty well grasping things but still really struggles with the release/opening of his hand. We've also noticed his hand control really depends on the position his wrist is in, he gets fatigued keeping his arm and hand straight and his wrist falls causing his hand to go down. This is a big issue when he drums so he has a small wrist splint he uses which seems to help.

Several months ago I saw on Facebook of all things, an add for a Music Glove (I still find it a bit creepy that facebook knows what to advertise to me based on what I search for on the internet). It's a rehab glove that isolates work on the pinch and release for the thumb and each of the fingers all done to music. As much as Jake likes music, we thought it might be a good thing to try. To get the fine motor skills back takes tons and tons of repetition and this seemed like a more engaging way to do it. I shared it with his OT and she did some research and thought it looked interesting, but we weren't sure he had enough isolated finger movement at the time to use the glove effectively. I brought it up to her again about a month ago and we decided it would be worth a shot. We talked to Jake to make sure it was something he was willing to take initiative to do 5 days a week working up to 20-30 minutes each session. He thought about it for a couple of days and came to us and said he wanted to try it.

It's pretty cool, he gets to pick which pinching grip he works on and if he wants to work 1, 3 or 5 grips/pinches per song. As the song plays, a little dot shows up on the screen and when it gets to the of buttons at the bottom showing the grip, Jake has to pinch. In the video, Jake is working on his middle finger and thumb, you can see the green dot coming down the middle of the screen. The sensors on the glove tell him if he's early, late or gets it exactly right. We got it two weeks ago and I took a video of his pinching without the glove and the first time he used it  https://youtu.be/PKZqNhlzC7I. The thing I've found interesting while watching him is how much he moves around when trying to get to pinch, it's like he needs the rest of his body to support what he's trying to do rather than isolating and moving only his fingers. He also holds his left wrist with his right hand for added support. First time he tried it he got 32/58 which is pretty darn good, the manual said it's normal to only get 5 or 10 on the first attempt.

We've been really proud of his dedication so far to "practicing." He needs a little help getting the little sensors on, but he comes to us and says he wants to practice instead of us reminding him. We're anxious to see how he progresses over the next several months, I'll be sure to keep you posted. :-)

Certificate of Excellence

I'm adding a disclaimer right up front that I'm going into proud mom mode and am going to brag on my kid. :-)

Back in March right before spring break, Jake came home from school and told me how that day in band his teacher had written a bunch of character traits on the board....team player, dedication, commitment, consistency, hard working, most improved and others. He asked the 40+ kids in the class to vote for which student they felt exemplified those traits. Sounded kind of cool, but I quickly forgot about it. About a week after he got back from break, it was announced to the band class that Jake had received the most votes and got "the award". He wasn't really sure what the award was, but was pretty excited.

We then received an invitation a few weeks ago to an awards night at Jake's school and figured it must have something to do with this award in band. Tonight all the pieces finally came together. One student per grade level was recognized for achieving excellence in each of the following: math, social studies, language arts, science, all the electives, sports or for earning a 4.0 GPA. Jake had been voted by his peers as the 6th grade recipient for band. Pretty cool honor. One, because drumming is so important to
him and two, he was voted as the most deserving of this award by his peers, not by teachers who as adults "get" what he's had to overcome. He was chosen not because he's the best drummer or the most popular kid in the class, but because of his attitude and hard work. Kids, many that didn't know him before this year and probably don't know his history, see him coming to class everyday putting in 110% effort. They see him not give up or quit when he got last chair for the percussion line. (The kids tryout for chair positions and he came in 4th out of 4 kids, it was pretty hard on him.) Receiving any award would have been wonderful, but to see him honored for something that means so much to him was pretty awesome. Can't wait to see what lies ahead for him.

Stay Tuned

I will be posting Monday night instead of my normal Sunday night because I want to share about a big honor for Jake that is happening tomorrow.

Stay tuned...