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. :-)

Vacation

You know it's been a good vacation when everyone is bummed to come home. None of us were ready to return to real life after being in Puerto Vallarta for 8 days.

It was so cool to see how much more adventurous Jake was on this trip as compared to two years ago. Last time we went he initially required a lot of coaxing just to get in the water, and Todd or I would need to stay pretty close to him while in the lazy river. He was so cautious and hesitant back then (understandably so). This time he was in the pool the first morning and was often the one initiating laps around the lazy river or rides down the water slide. Luke was quite a fan of flipping people over in their inter tubes and Jake didn't freak out when it happened to him. It was so cool to see how far he's come and being more comfortable and confident in the water. He even went parasailing, which to be honest freaked me out a little while he was up in the air. I was a bit worried he wouldn't be able to pull the rope when it was time to come down, but he handled it like a champ.

His stamina has improved soooo much. It's sometimes hard for us to see a difference from day to day, but when we looked at how he did last time we were in Puerto Vallarta compared to this time, the difference was remarkable. The resort is huge and there is so much walking to just get from one place to another. We did use the wheelchair a few times and had the boys trade off (Luke wore his walking cast everywhere except the pool) just to reserve their energy, but the chair spent a good portion of trip parked in our room.

Much to Jake's delight he officially passed me in height on this trip. We were both barefoot standing next to each other in front of the mirror when I realized he was taller than me. It's so rare that one of us doesn't have on shoes to truly confirm who's taller. Yes, I'm only 5'1", so I knew it was coming, but it was still a bit sad, there's no denying my little boys are definitely growing up. I think I need to go shoe shopping and buy more heels!

We had such a good time...lots of relaxing and quality family time. I feel so grateful we had the opportunity to get away together as well as a great comparison for how far Jake has come in the past two years.

March Update, Getting Ready for Vacation

Geez, I didn't realize it had been so long since I posted! Things have been pretty status quo around here the past several weeks. Jake has been going to PT the past month to help maximize his botox and seems to be doing pretty well. He also got braces on his teeth about a week ago which he wasn't thrilled about (he had them once already in 4th grade). After a few days of Tylenol and some soft food, he seems to be doing better. As he said to me, it feels like I'm eating with a mouth full of loose teeth. Poor kid.

We are getting really excited to go to Mexico soon for vacation. If you've been reading the blog awhile, you may remember that the first time we went post-stroke, Todd and I were really struggling with the decision to go or not to go (here is that post if you're interested). Jake was only about 10 months past his incident and had not progressed nearly as much as we had thought he would when we booked the trip. After a lot of consideration we ended up going and it was a different but good trip.

Planning for this trip, things are so different. It's now been almost three years since his stroke and while there will still be similar issues as before, they are just more a daily part of our life now. He's done swim therapy the past few summers, so he is much more comfortable in the water. He can wear his old leg brace when he goes in the pool if he wants the support. The beach will probably still be a bit of an issue, but he can handle it if he chooses. We have an added issue with the beach this year since Luke broke a bone in his foot and will be in a walking cast when we go, so beach time may be limited anyway! We've been back and forth on whether or not to take his wheelchair. He hasn't used it at all since we got back from Yellowstone last July, but there is a lot of walking at the resort. Between Jake and Luke's broken foot, we'll probably end up taking it just to have it with us.

One of the things I am really anxious to see is how his walking is while we are there. Two years ago, his walking really improved while on vacation. We never figured out why, could have been just being relaxed, no school/therapy, lower elevation - who knows. We haven't been back to sea level since so I'm really curious.

I'll be sure and post how things go!

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.