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.

Three weeks down,three to go!

Jake got his cast switched on Friday and things look really good. I had no idea how much padding they had put into first cast until he got the new one, it was huge! He still has some swelling around his ankle (that is to be expected) and five pretty good sized incisions that are healing nicely. It was pretty exciting to see how straight his foot was already and they said it will continue to get better.

He had to wait the full three weeks to walk on it, so was able to test it out a bit this morning. He said it hurts a little but he's getting around surprisingly well. I am really hopeful that this is going to make a big difference in the long run for him.

Just wanted to share a quick update, I'll post again when he gets his cast off.

Post Surgery

Wow, being at the hospital for Jake's surgery was a day of flashbacks and memories. We've been to the hospital MANY times since he was initially discharged, but hadn't been back to the surgery center or on the 6th floor where Jake spent his summer three years ago.

Sitting with him in the pre-op area was so different from when we were there to get his bone flap put back in place. In August 2013, the surgery was one of the last steps needed to go home, so while we were nervous, we were also excited as it represented a huge step in his recovery. This time having his foot operated on is the beginning of a long healing process. His feelings about being there were noticeably different too. He was much more nervous, very bummed about having the surgery and what the recovery will entail.

After surgery when he was moved up to a room for the night, we ended up being just two doors down from where he spent over two months in rehab. Just walking down that hall and going into the hospital room brought back a flood of memories. We must have walked up and down that hall hundreds of times coming in and out of the hospital, going to and from the rehab gym...it was just so surreal to be back. That was such a crazy time. We were hoping to see some of our favorite nurses, but none were working the day-and-a-half he was there. We did however get a very nice surprise visit from his impatient OT Ellen who we loved. She stopped by while he was in surgery and again in the afternoon to Jake. It's hard to believe almost three years have passed since he was discharged from the hospital.

The way Jake handles things never ceases to amaze me. He had three procedures resulting in five incisions on his foot/leg. One of them involved cutting bone from his heel and moving it a full centimeter then reattaching it with a metal plate and screws. That should cause a significant amount of pain. We gave him Tylenol and Ibuprofen every six hours for the few days, but didn't wake him up at night to take it. By Thursday, he only had a few doses and this weekend, he only mentioned he was in pain once, and that was because his calf is tight.

While he's been primarily confined to the couch, he has hardly complained at all. And in typical Jake fashion, he is wanting to do things for himself. We have a knee scooter for him to get around on since he can't put any weight on the left foot for three weeks. I generally help him get off the couch and onto the scooter, but looked down in the family room a few days ago and saw him coming back from the bathroom by himself on the scooter. While I appreciate his determination, he really shouldn't be doing that alone. :-) We've been taking walks at night in his wheelchair to get him out of the house, and we're planning to get out and about a little more this week. Luke has been a very supportive brother playing a lot of games and just generally keeping him company. They have also watched a ton of movies, which with as hot as it's been has been a nice diversion for him too.

Thank you so much for all your prayers and check-in's.

Upcoming Surgery

It's crazy how fast this summer is going by. We had so many plans of things to do before Jake has his surgery on July 11th, and now we only have one week left. We did manage to have some fun this weekend with putt-putt and a great bike ride around Aurora Reservoir. We're already making plans for things he can do in his wheelchair after surgery so he can get out of the house.

With surgery just a week away, I think the reality is really setting in with Jake. He was asking a lot of questions at dinner tonight, the big one "Why don't I have a choice?" That's a tough one to answer. As we explained to him, for most everyone surgery is not a choice. Something in their body isn't working the way it's supposed to, and there generally aren't any other options. We don't really want to do this either but if the surgery will help get his foot flatter and make walking easier, it will be good in the long run and a tough decision we have to make. 

He is having three different procedures: A tendon transfer, which will split the tendon that runs along the instep and move part of it to the outside of the foot (this is due the tightness in his foot that causes it to rotate in). His heel cord is too tight so they are going to release it. And finally a heel slide where they cut his heel bone and move it over so his foot gets in better alignment. 

Post surgery, he'll spend six weeks in a cast, with three being non-weight bearing. That's going to be interesting since we live in a multi-level house with a lot of stairs. :-) He's supposed to be able to walk on it after three weeks, so we'll see how it goes. 

Right now our focus is staying positive about how much this should help and trying to keep him from being too nervous. Would greatly appreciate some extra prayers for a successful surgery. 

Summer Camp at Roundup River Ranch

We took Jake to camp on June 8th and he got back this past Monday. He was excited to go in the days leading up to camp and even took the news he couldn't have his phone to listen music pretty well (listening to Rush is what he does when he's chilling and needs to recharge).

We got to camp, got him checked in through the medical team and then headed to his cabin. When we were getting ready to leave, I think reality set in that he would be there for six days on his own and he got a little emotional. I had to leave the room because I was on the verge of losing it and didn't want to make things worse. The counselor noticed what was going on, reassured me it was normal and then got Jake engaged in a game. We said our goodbyes and left. I'm so glad Todd was able to go up with me to drop him off because I was a bit teary for the first part of the drive home. While I had complete faith and trust in the staff at the camp, it was really hard to leave Jake. I had so many thoughts going through my head....Would he have fun? Would he make some friends? Would he ask for help if he needed it? He was on his own for the first time since his stroke and didn't know a soul. We are so tuned into when he needs help with something and these people didn't know him, add to that he doesn't always ask for help when he needs it.

It was so strange not having him home, he is pretty much always here. He doesn't go to friends houses very often or to sleepovers like Luke, so his lack of presence was really noticed. Luke commented more than once how quiet it was with Jake gone. I tried to keep busy, but found myself often wondering what he might be doing at that moment or if he was making friends. I broke down emailed the camp recruiter on Friday to check in. She said he was being a little shy and quiet around the other kids but was really enjoying the activities and had just got back from archery. She also said he was drumming that night for "stage night." Nothing she said surprised me, but it was so reassuring to know he was ok rather than wonder.

Jake had decided before he left for camp that he'd ride the bus home and we picked him up from Children's Hospital. (The camp is about three hours away from where we live).  Luke and I went to pick him and I had so much nervous energy waiting for the bus to arrive. It's truly a different experience picking up a child when he's been to this type of camp. It wasn't your typical all the kids unload in a free for all and find their parents. First, there were eight wheelchairs unloaded, all the luggage, three big tubs of medication and an oxygen machine. It gave me a whole extra level of respect for what they do to make camp possible for these kids. We had to get in line, show an ID, give our PIN and sign our kids out. Then they gave back any unused medications and finally called your child to get off the bus. I was so thankful we got there early and only had to wait behind three other people, I needed to see Jake! It was so good to lay eyes on him again.

He said he had a good time and would want to go back again. Success!! He didn't really make any friends, but honestly that didn't really surprise me. It takes him a lot longer now to connect with people and with all the activities they had going on, there just wasn't enough time. He still enjoyed himself and got along just fine. He's been a little more self-sufficient since getting home which is cool to see. All in all, I am so pleased things went well and can't wait to go as a family in October.

Surgery, Bike Rides and Camp

There is nothing quite like having to tell your son he needs to have foot surgery, that was an emotionally draining conversation. We decided not to get into too many details at this point and presented the big picture, then let him ask questions. Just knowing he is having surgery this summer and will have issues walking for awhile post surgery was enough to digest. Just knowing what he did and that he'll be losing almost a month of summer left him pretty upset. It was really important to us to let him feel he had a say in this and make decisions as appropriate. He decided not to do his intensive PT in June that we had planned since we'll be doing so much therapy post surgery. We also talked with his rehab doctor on Thursday and opted not to get botox in his leg this time. He would only have the benefit of it for a month before surgery, so why put him through the shots. We really hate to have his surgery in the summer, but the alternative of waiting until August would present so many more challenges and require him to miss the first couple weeks of school. 

On a much lighter and happier note, we did our first "official" bike ride today!  It was Elephant Rock in Castle Rock will several different rides to choose from all the way up to 100 miles, we choose the 8 mile family ride. After a slightly bumpy start with a flat tire that had to be repaired not once, but twice, we had a great time! It was such a beautiful day with the route going along this really nice path. We got to ride with Adaptive Adventures which was also cool, they had about 11 people participating today. The boys did great, but Jake was pretty wiped out by the time we were done. 

Jake heads off to camp at Roundup River Ranch on Wednesday. He's getting pretty excited and we've been talking a lot about all the great stuff he'll get to do. I think it's going to be such a good experience for him. It will be a long six days here wondering how things are going but I'm sure Luke will keep me busy.

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. :-)

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.