February Update

Things have been pretty chill the past few weeks other than a series of appointments for Jake, seems like they always run in spurts. He got botox again two weeks ago and is going to start another round of PT this week. Our original plan was to wait until summer for a 3-4 week PT intensive session. Unfortunately with the growing he's doing, we're finding the botox isn't lasting as long so we want to do all we can to give him the most benefit from the shots.

His growth spurt also caused the need for a new leg brace. We started that process back in November with his fitting, finally got it in early January but had to send it back because it wasn't made correctly. Now almost three months later, he's got the new one and it fits well. I was surprised to see the knee hinges were almost a full inch higher up than they were before. Looks like a lot of his growth is happening in his legs!

We're also exploring the idea of having Jake go through the Gait Lab at Children's Hospital. He had an evaluation last week with one of their PT's and she thought it would be worth considering, so now we'll consult with his rehab doctor. It's pretty amazing technology that could hopefully give some insight to what is happening inside his legs with his muscles that keeps him from being unable to get his foot completely flat. They hook him up to several electrodes, have him walk while gathering data and creating a 3D image. Afterwards, a team of experts from several different disciplines including physical therapists, kinesiologists and orthopedic surgeons do a comprehensive analysis and make a treatment recommendation. The prospect of having so many fresh eyes each with a different perspective review his case is pretty exciting. I've felt in my gut there is something else we could be doing to help his foot get flat to improve his walking. If we get approved for the gait lab, it won't be until May as insurance approval takes awhile and they want to do it when the botox has fully worn off. Stay tuned!

We all have bad days

Sometimes emotions hit me completely out of left field and kind of surprise me. I had one of those days about a week ago. When I dropped Jake off at school and watched him walk down the hall, this overwhelming sadness hit me and I had to fight back the tears. There he was by himself with his unique gait and his left arm bent up to his chest going down the hallway to class. All around him kids were walking effortlessly, laughing and talking like kids are supposed to do. I then felt this deep anger that a senseless stroke took away his carefree young life and instead of dealing with everyday teenager issues, he's got a whole extra layer of struggles. It just isn't fair. Even as I sit her writing this and thinking back to that day, tears are streaming down my cheeks. The anger has passed and I am just sad for what will never be...he won't get these years back and is going to have to deal with the repercussions of his stroke for the rest of his life. I know other kids/people have issues they deal with everyday and I recognize that. Everyone has their own struggles and I don't mean to insinuate Jake is the only one who has tough stuff to deal with. But on that day, I was just deeply sad for our son with what he has to go through.

When I got back to the car where Luke was waiting, he could see on my face that I was upset and asked me what was wrong. I told him and we talked a little bit about it. He said he also gets really sad sometimes talking about Jake and has to fight back tears. He told me that he feels guilty sometimes because while he feels really bad that Jake had a stroke, he's glad it wasn't him. I totally get that and told him that was normal. He also said "I am really wise and have a gift that I know how to help people. A lot of my friends come to me for advice, and I help them. So if you ever need to talk to me, you can." It was so genuine and sweet...definitely brought temporary smile to my face. He has really grown up through this ordeal and truly amazes me sometimes.

I'm glad these type of days don't happen too often and that most of the time I'm able to stay positive and be very thankful that Jake is doing as well as he is and at how far he's come. But every once in awhile, I'm going to allow myself the time to be sad, angry, ticked off and whatever other emotions come my way. I think we need to allow ourselves to feel the wide range of human emotions, just can't stay there too long.

Drumming

One of the things that brings Jake complete joy is drumming and it's heartwarming and heartbreaking at the same time to watch him play. He enjoys it so much and tries to hard, but his left hand just can't keep up and I remember how good he was getting before his stroke. At times he has to stop and re-position his left hand on the drum stick because it loses it's grip. He also can't move it around the drum kit nearly as much as the right, but he tries really hard to keep a steady beat with it. I honestly wonder at times how he does it...

He has been taking weekly lessons for about the past year and the first several months were spent doing a lot of "drumming therapy," working on basic beats and patterns that helped to engage the left hand. He's recently started working on playing some songs and seems to be really enjoying it. Here's a clip from a few weeks ago playing some Tom Petty. (Sorry the first little bit is bouncy, it gets smoother after about 10 seconds). https://youtu.be/FRyaBhcdjl4 They use an electronic drum kit at his lessons, it's a lot quieter since the volume is controlled by an amplifier or it can be completely silent when used with headphones. It's also more forgiving since all the drum and cymbal heads are rubber. He's been saving his money for one for awhile and we decided to pay for the rest of it for Christmas. Because they aren't loud, we put it upstairs in the spare bedroom. His regular drums are in the basement and he doesn't like going down there by himself, so if Luke wasn't in the mood to practice his guitar and go down with him, Jake wouldn't go. Since getting them, his practice time has more than doubled. I am so glad he has something that he truly enjoys doing. It feels like so much of his day involves frustration or doing things he doesn't like to do (PT exercises, stretching, being corrected by us on his gait), it's good he's got something that brings him pure joy. I've asked him if it's frustrating for him now since both hands can't go at full capacity and he surprised me when he said, "a little, bit but not really." I wonder at times if it's harder on Todd and I than it is on him, but I love that he still tries and hasn't given it up.

Constraint Therapy

It's been a long couple of weeks in the Morgan household...Jake has spent his winter break from school doing constraint therapy to try and help increase the function in his left hand. He was fit for a cast in the middle of December that he wears on his right hand which forces him to use his left hand. It was removable to make things like showering easier, but in retrospect I wonder if we should have gone with a permanent cast...

We made the decision to do this back in November at one of his OT appointments. It's something that she had mentioned before, but I've been resistant because I knew how hard it would be for him (and me watching him go through it). Imagine having to use only your non-dominant hand to do everyday tasks like eating or getting dressed, then take away a lot of that hands function. Doesn't sound like too much fun. I hated the thought of putting him through that. When his OT and I talked in November, she mentioned how much progress kids can show in a fairly short amount of time because of the forced use. Jake has talked about wanting to improve his hand function so he can drum better, so it seemed like the right time. He wasn't thrilled about the idea but he was willing to try it.

As you can imagine, it was extremely frustrating for him. The first morning he had the cast on we had scrambled eggs, bacon, hash browns, and pineapple for breakfast. Not very stab-friendly foods, he was almost in tears after struggling to get eggs into his mouth three or four times. We actually got to the point where we told him to forget the fork and just try to eat with his hands. That didn't go well either, not much to grab when eggs are scrambled and pineapple is slippery. We were told that if he got too frustrated to take it off, it wasn't supposed to be viewed as punishment. We ended up taking the cast off so he could eat and realized we needed to plan our food options a little better. (He had much better success later in the week with yogurt and omelets.) Todd had decided he would get a cast made too so Jake wasn't doing it alone and we all ate with our non-dominate hand in support of Jake. Todd and I also put on an oven mitt while eating to try and hinder us a little further. While it was hard (especially drinking coffee), it was no where near what Jake was going through.

Another tough one I hadn't even thought about was hooking his seat belt. I would pull and hold the strap but wanted him to put the buckle into the clip, again not an easy one-handed task. There is alignment as well as pressure to make it work. He would finally get it but took awhile. We were supposed to encourage him to actually do things when he was wearing the cast, not just sit and watch TV and not use his hand. He and Luke played connect four and some other games or would eat popcorn while watching a movie, but if left alone his choice was to sit and "do nothing."

He ended up wearing it less than I had envisioned. We had planned on taking the cast off when he slept and showered, as well as Christmas Eve and Christmas Day. It was hard to deal with when he had his coat on because we couldn't get the sleeve over it or a glove on, so it came off a lot when we were out. Because of the directive to not make it a punishment and Jake's frustration level, we would take it off if a meal was especially difficult and when he wanted to play his drums. (On a positive note, he practiced A LOT over break.)

Wearing it for any length of time made him really tired, he's slept more during break than I've seen in a long time. It makes sense, he's having to work so hard to do the simplest of tasks, it's exhausting. He also had four OT appointments in two weeks where he worked on strength exercises to further rehab his hand. It was so tough to watch him struggle and get so discouraged, that didn't help my resolve too much either.

We took video's several times throughout the past few weeks of him eating so he could watch them and see the progress. I promised him I wouldn't share them because many times it wasn't too pretty and a lot of food ended up in his lap. He has a really hard time rotating his wrist as well as bending at the elbow, so even when he could get something on the fork, getting it into his mouth was a challenge.

We have seen progress, honestly not as much as I had hoped, but there are improvements. I think being realistic, we only had two weeks and he could have worn the cast more. We're going to continue having him wear it a couple times a week in the evenings and do something like play cards or a game where he can actively use his left hand so he doesn't lose the progress he's gained. All we can do now is continue trying to find ways to support him moving forward.

We Now Have a Teenager

I have these moments sometimes when I pause and wonder if everything that has happened to Jake has just been a bad dream. There is no way our son had a brain aneurysm burst and very nearly died. He hasn't had to go to hundreds of appointments/therapies. He can't really have to deal with the struggles he has every single day. I'm going to wake up and have things back the way they were. Most of the time, I think I have a pretty good handle on our life, so when these thoughts enter my head they honestly surprise me. You would think two and a half years would be enough time to accept the reality of his situation.

I think this most recent round hit me because I was going through old pictures on Wednesday, the night before Jake turned 13. Going through pictures always makes me nostalgic and shocked by how quickly time goes by. When I got to pictures of the weeks leading up to his aneurysm bursting, I found myself getting really emotional. None of us had any way of knowing how drastically things would change on May 31st. I look at those pictures and he was so carefree and happy, like most kids his age. The picture of him in the ocean was a few months before when we were on vacation. I remember he and Luke running in and out of the waves and racing down the beach...they had so much fun together. Jake is so much more catious now and not nearly as carefree. I get sad sometimes wondering what his life would be like now if this had never happened. I think it's normal to have those "what if" moments, but I try not to let myself stay there too long. It doesn't do any good and it's not our reality. I just as easily go to the flip side and then feel guilty becuase I should be (and truly am) thankful that he is doing as well as he is. Things are just different now.

As I look at him now 13, I am so proud of the young man he is becoming. He has incredible strength, fight, and determination. He is quick with a hug, he's gentle and kind. He teases me about how close he's getting to be as tall as me (he's within in about an inch now). He loves his brother more than proabably anyone else on earth and likes to spend time with his family. He's got a great laugh and wonderful smile.

I cannot wait to see what life has in store for Jake...he's going to do great things.

November Update

Poor Jake, he's caught his first cold of the season and it's probably thanks to me. I hate to see him sick, everything just slows down so much. His walking isn't as affected as it has been in the past, but I am really noticing his response time is much slower with this cold. It makes sense, I know my brain slows down when I'm congested so it's going to hit him even harder. We're doing everything we can to help him get over it, so hopefully it won't last too long.

With some of the walking issues he's been having we had a few PT appointments this week. He had taken a break since the end of summer and we had planned on doing a mini-intensive session over winter break. We decided to move that up to see if we could take advantage of the botox he got about a month ago. It was interesting, his PT measured the angle of his foot/ankle to track his progress. She measured it this week and it was the same angle after the botox as it was this summer before botox. What that means is the growth spurt he's going through is affecting the tightness in his foot even more than we thought it was. This round of botox just brought him back to what we thought needed treating this summer. Even with more botox, he can't get his foot all the way flat, it pulls to the outer edge. She's trying some foot taping to help hold it in place but doesn't want to do it too often because tape can be hard on his skin. Not quite sure what our plan will be going forward once the botox starts to wear off again...

He also had to be fit for a new leg brace this week since he's outgrown the one he at the end of  February. Both the orthotic specialist and his PT recommended he get another full leg brace to offer him the extra knee support while he's growing, so that's what we're going with. This one will not be in two pieces like his current one. We didn't end up utilizing the take-apart function to give him the choice of full leg or below the knee, so the new one will be a little more streamlined. I hope it doesn't take too long to come in...that's the hard thing with the braces, they usually take 3-4 weeks. By the time you realize they need a new one, it's getting too small but it takes another month to get here.

Veterans Day Parade

We were so honored to be invited by Adaptive Adventures to be in the Veterans Day Parade today. They are the group that we rode recumbent bikes with this summer at Wash Park and who hosted the day camp at a local lake where Jake got to waterski. They are such an amazing organization giving disabled kids and vets the opportunity to participate in various sports. We took our two bikes and they let us borrow two of theirs. Luke wanted to try the hand cycle, so he and Todd rode those and Jake and I rode ours. They got quite the workout powering their bikes through Denver with just their arms!

I haven't been in a parade since I was in marching band in high school. This was quite a different experience. I was on the verge of tears the entire route seeing all the people along the way who had come out to honor our veterans and were waving flags. I wished we had been able to watch the parade. They organized it by different conflicts in military history: Revolutionary War, Civil War, WWI, WWII, etc., we were in the Desert Storm section. There were so many groups participating and the organizers did a great job taking everyone through our military history. My mom and dad came and said it was a great parade. I was so glad they were there and able to take all these pictures for us. It's not every day you get to ride a recumbent bike on the streets of Denver and go by the capital! You couldn't have asked for a nicer day in November, it really was an amazing experience. I feel very fortunate we were able to participate and help honor our veterans.

I think their dad serving in the Air Force and Air National Guard has definitely had an impact on both the boys, especially as they are getting a little older. Todd was deployed twice since they were born, once when Jake was 3 months old and again in 2009 when Jake was 6 and Luke was 4. We were lucky he was only gone for about three months each time, but I remember it having quite an impression on the boys at the time. Both Jake and Luke are taking part in their respective schools Veterans Day programs this week. 

I would like to thank all the veterans and active military for your service and sacrifice to protect our country.