8th Anniversary - A lot is happening this year!

It's hard to believe that it's been eight years since this whole journey with Jake began. Looking back he seemed so young and little when his aneurysm burst...now he has just finished his senior year and will be graduating high school on June 8th.

I think having your child graduate is a huge milestone for all parents. Jake's brings a whole extra set of emotions along with it. He's been through so much these past eight years and has worked so hard to get to where to he is today. Add to that, it's been a crazy year that didn't feel at all like a a traditional senior year. 

He's been a trooper through all the school changes - starting in  August with a mix of online and in school learning, to 100% online, back to mixed, and finishing the year out full-time in person. I am really thankful he gets to have a close to normal graduation with us, Luke, and both sets of grandparents in attendance.

Jake has decided to attend Community College of Aurora for at least the next year while he figures out what he wants to major in. He's pretty burned out on school right now and really doesn't know what he wants to do. He's leaning towards economics and we'll see how that goes. He's working this summer as an intern with Cherry Creek Schools in their IT department helping get 1000's of new computers set up for next year. It's the perfect job for him since it's not a lot of time on his feet and 4 hour shifts. 

Jake continues to go to OT and PT and he's also looking at another potential foot surgery this fall. You may remember he had a pretty major foot surgery back in July of 2016 and unfortunately his foot has regressed and is looking a lot like it did prior to his previous surgery. If you look at this x-ray, you'll see his left foot and ankle pronate out and it causes a lot of pressure to be put on the outside of his foot when walking. We've spent the better part of a year trying different braces and adjustments to get him comfortable when he's walking. Spending so much time at home and not having to walk at school ended up being a huge blessing while all this was going on. We've finally got him in a pretty good place and he's relatively comfortable in his brace. We walked over 6 miles a couple of days ago while touring the University of Wisconsin with Luke and he was tired, but not in any pain. That was a huge win. The surgery would allow him to be more comfortable walking without his brace when at home and just get his foot in better placement. We are leaving the decision up to him since he is the one who has to tolerate the pain. If he decides to have the surgery, it will mean 3 weeks of non-weight bearing and 3 weeks in a walking cast following by a lot of PT. There isn't any availability until mid-September, so things will get interesting with attending college classes. 

It is such a blessing to see the young man he is turning into. He is kind, thoughtful, incredibly helpful around the house, and is extremely appreciative. I honestly don't know how we got so lucky, he truly is an amazing kid. While this has not been an easy journey, I am so thankful for all the support we've received the past eight years, especially through the school. He's has had some incredible support staff and teachers in his corner. I am really going to miss them now that his chapter of his life is closing. 

 

7 years later

This 7^th anniversary update should have been posted from Italy but due to the COVID pandemic, that trip has been postponed until next May. ☹ What a crazy time these past few months have been.

It's amazing how much can change in a seven-year period. In 2013, Jake was still in elementary school just finishing 4th grade when his aneurysm burst. He was back at school in mid-August for a few hours a day and needed a ton of support. He started 5th grade using a bike to get around school because walking that much was way too tiring. Some of school was really hard because of the areas his brain was injured. And whether he liked or it not, he had to depend on for many of his day to day activities. Jake also was attending A LOT of therapy in the early days. 

Fast forward seven years later...Jake just finished his junior year of high school. (I still can’t quite believe he's going to be a senior in the fall.) He’s getting around a very large high school, needs no classroom support, and has even taken some advanced classes (plus he’s getting really good grades and even got inducted to the National Honor Society.) He was in pep band again this year, is driving, had a job at Target last fall/winter and is quite self-sufficient. He’s still doing therapy, just not quite as much in clinic since we’ve switched to pretty rigorous home program instead.

His biggest struggle continues to be his left arm/hard and the excessive tightness. He adapts quite well in a lot of areas doing things one handed, but not being able to drum two handed is his biggest frustration. He was really hoping to move up to Jazz Band II at school this year after being in Jazz I for the past three years. Unfortunately, even with all the heart he puts into his drumming he didn’t play as well as the other two-handed drummers. He didn’t make the cut and he made the difficult decision to leave band. I was so heartbroken for him since I know how much he enjoys band but supported his decision to not take the same beginning band class for a 4^th year in a row. We’re trying to find another musical outlet for him once things start opening up a bit more due to COVID.

We’ve continued to get involved with some great adaptive programs this past year; I think the highlight for Jake was wakeboard surfing. The instructors were so good, and he got up on his second try. The instructor also got on the board with him to give him a little bit longer ride. It was so fun to watch.

Jake is growing into an extraordinary young man. I think all he has been through has really shaped his character in a lot of positive ways. He’s kind, hard-working, helpful, appreciative, even keeled, self-advocates, and is a joy to be around. I know this next year is going to be a whirlwind and he finishes high school, so I’m really trying to enjoy the time we have together.

We've Got a Driver in the House!

Jake got his driver's license today! He's been working towards this huge teenage milestone for a year and a half, and I think his smile shows how excited he is. As with most things he has encountered since his stroke, his path requires a few more twists and turns, but with his sheer determination he did it. Todd and I couldn't be more proud of him. Now to deal with the joys of car insurance and a teenage boy... 

Shortly after we got back from vacation, Jake and Luke took their first solo trip to San Diego to visit my brother Ryan and his wife Melanie. They were so excited to travel on their own and had such a good time. They are already asking when they can go back. 

We've spent quite a bit of time this summer trying to figure out how to deal with Jake's foot. The pain he's had walking has decreased due to some additional adjustments to his brace, which has been great news. His surgeon is a bit perplexed why his foot has regressed back to a similar position it was in before his surgery three years ago. Until that can be figured out, he's hesitant to do another surgery. We appreciate the cautious approach and met with his rehab doctor last week. The plan for now is to try a few different medications to see if they can help loosen things up the muscle tightness in his foot. The hope is will help the overall foot position and consequently walking. I'm glad we have a few more weeks of summer to test things out before he goes back to school. Fingers crossed it works. 

This is the first summer we haven't had tons of therapy appointments and I think it's been good for everyone. It's allowing us to have a little better balance of downtime and fun which we've all enjoyed. Hard to believe we'll all be back in the routine of school in just a few short weeks...  

6th Anniversary

It's hard to believe another year has already gone by and we are celebrating 6 years since Jake's survived his stroke. We're fortunate to be marking this anniversary while in Puerto Vallarta on a family vacation. We celebrated with a fun family day and delicious dessert that we all shared.

Jake just finished his sophomore year of high school and had another great year. We've seen him continue to get better at advocating for himself and is handling high school really well. He got  good grades, was accepted into National Honor Society, and joined pep band. Pep band was a pretty big commitment all through the fall and left him pretty wiped out on weekends after a Friday night game. But he seemed to really enjoy being part of the drum line and it was fun for us to go to the high school football games.

He has continued getting in his driving time and did several hours with an adaptive driving instructor during the winter. He needs some adaptations to our car that prevented him from being able to drive with one of the driving schools, which consequently kept him from being able to get his license at 16. (In Colorado, you have to have 6 hours of driving with an accredited school  to get your license at 16.) He has come so far in his driving and it's sooo much less stressful for me to drive with him. He's planning on taking his driving test later this month now that he's 16 1/2 and both he and Luke are excited for him to get his license. I'm not so sure I'm ready to have a teenage driver in the house, but am excited for him to hit this huge milestone. :-)

We got up skiing/snowboarding a little bit more this year and his progress is really exciting. He's so close to being fully independent on the mountain. His season got cut a bit short due to some issues he's been having with his foot which was a bit of a bummer. Crossing our fingers we can go a bit more next winter.

So speaking of Jake's foot...you may remember he had surgery three summers ago to help get his foot into better alignment to make his walking easier. Surgery was successful and things have been going along pretty well. He had a really good stint of a home based physical therapy program last summer and made a lot of improvements in strength and flexibility. All things considered, his walking was looking pretty good.

Then in March, he started having a lot of pain in his foot, his foot is starting to rotate to the side again and it's putting a lot of pressure on the side of his foot (pinky toe to ankle). Jake has a really high pain tolerance, so when he says something is hurting, it's really hurting. After trying several things - dry needling, acupuncture, brace adjustments, X-rays for a possible fracture - we were getting nowhere and the pain was getting worse.

It got to the point where he decided to use his knee scooter at school. Prior to that I would pick him up from school and you could see by the way he walked he was in a lot of pain. The surgeon who did his initial surgery wanted to do another Gait Analysis to see if he might need surgery again. While Jake still growing, we knew there was a risk the surgery he has three years ago may not last. Only problem was the Gait Lab at Children's here in Denver was backed up 3-4 months to get an appointment which meant we wouldn't have any idea of a game plan until late August/early September. When your child is in pain, that just isn't an option. I called around and was able to get him into Shriner's Hospital in Salt Lake and have it done there. We went a few weeks ago and should have their recommendations when we get home from vacation.

I feel blessed everyday to still have Jake in our lives. Not only does what we all went through help keep things in perspective (although if I'm being honest, the further we get away from his stroke, the more conscious effort it takes to not let the little things get to me), he is truly a joy of a kid. He is extremely appreciative, does his chores without being reminded, stays on top of his homework/grades, offers to help me in the kitchen, is kind, and an overall pleasure to be around. Plus, he still likes hanging out with us and I'll take that for as long as I can get it. :-)

5 Year Anniversary

It was five years ago that Jake had his stroke (and almost a year since I posted an update - yikes)...time really does fly by. In some ways it doesn't seem like it was that long ago and in others it seems like a lifetime ago.

Jake has come SO far since then...he was just a little boy dealing with a horrible medical situation and very dependent on Todd and I. Looking back, I don't know how much of that was our need to want to protect him and run interference vs. his need to be taken care of. Starting shortly after we got home from the hospital, he was resistant to being treated differently from everyone else. He didn't want accommodations being made for him and just wanted to "be normal," but that wasn't always possible. As he's getting older, he's accepting some things need to be different for him, but pushing back where he feels they don't. He's becoming a much more independent, capable young man learning to navigate things on his own.

Since it's been awhile. I'll catch you up a little on what's happened the past year.

Jake started high school in August. He goes to a huge school with over 3000 students. If you asked him how school was going those first few months, he was quick to tell you that it was a 1/4 mile from one end of the school to the other and he had classes at both ends. I'd be lying if I said I wasn't a bit apprehensive about how his transition to high school was going to go. There were so many kids and so much distance to cover, especially for a kid with ambulatory issues. He was given extra time to get between classes and able to pass when there were fewer kids in the halls which really helped (one of the things he realized was a beneficial accommodation for him). He was often wiped out at the end of the day, but he persevered. Jake was in regular grade level classes for all of his core subjects. In 3 of the 4, he was in a co-taught class which meant there was a second teacher who was there to modify classwork as needed. Jake consistently declined any of the modifications that were offered (things such as outlines for taking notes, or spreading questions out on a test to allow for easier visual processing). In fact he not only got through 9th grade, he excelled and in a big way.  He got straight A's all year, was recognized for achievements in Math and Science, invited to join Honors Chemistry next year, and was told he no longer needed to be in co-taught classes. More important than the academics, Jake became more self sufficient and stayed on top of his homework and assignments with almost no input from me. Todd and I could not be more proud of him. 

Jake got his driving permit in December and as you can tell from the picture he was pretty excited. Getting a permit is a big deal for any kid, but with all of his post stroke issues it was a huge milestone for him. He took the initiative to do the 30 hours of classwork study for his permit on his own and passed the test on his first try.  

The first time we took him out driving didn't go well at all.  We unintentionally threw way too much at him and he ended up in tears of frustration. "This stroke has ruined my life!" I was almost in tears because I didn't want his first exposure to driving to go this way. Driving is one of those rights of passage for kids and once again, Jake had added challenges due to his stroke. We calmed him down by telling him driving is complex and we didn't plan his first outing well. We've  broken driving lessons down into smaller steps and it made all the difference. We also got him a turning knob for the steering wheel which eliminates the hand over hand needed for turning (a challenge due to his left hand weakness). His confidence has really improved and he's getting better every time he goes out. We're balancing getting him out on the main roads more with making sure he's safe due to his vision issues.

He's been in vision therapy for the past 8 months working on a number of driving related issues. He's improving how his eyes work together, reaction time, scanning everything around him, and adjusting for his lack of left side peripheral vision. It's a slow and exhausting process but I do think it's helping. This summer he'll have some OT driving sessions to continue helping him figure out what accommodations he needs.

After the success last year, we got Jake snowboarding more this past winter. Eldora's adaptive ski program has been amazing. The instructors are so good at helping where they need to and allowing the students the opportunity to do things on their own in a safe way. They often mirrored Jake and were there to guide or help with a turn if he needed it, but let him do it on his own when he could. We all were really pleased with his progress this season and are looking forward to next winter.

With summer now here, that means time for intensive therapy. As Jake is getting older, we're involving him more in decisions around his therapies. He is definitely sick of spending summers in appointments, so we try to find the balance of fitting things in and free time. Some things he simply has to do, but he does have say in what that schedule looks like in terms of number of appointments in a day and which areas he wants to work on. This summer he's focusing almost all of his therapy attention on his left arm/hand and has chosen to do his PT as a home exercise program instead. He's been really frustrated with how tight his hand is and how that affects his drumming, so that's his goal. We excited to see what improvements can be made with the schedule he's got planned. 

Well this ended up being a much longer post than intended...I guess that's what happens when you don't give updates in several months. 😉

Summer Break

Even though school got out six weeks ago, we are finally starting our summer break and not a minute too soon. The past six weeks have been full of no less than 15 hours a week of therapy/appointments (including drive time) and we are all whooped.

Jake had his annual post-stroke appointments, gait lab analysis, and botox all down at Children's Hospital. He's also had several sessions of  OT, stretch, neuro-feedback, and a couple sessions of PT. Add in there a few trips to the chiropractor and getting his braces off (that was one he was very excited about!). And finally this past Thursday we went down to Penrose Hospital in Colorado Springs for his driving evaluation.

It's so hard to find balance in the summer. It's such a great opportunity to fit in extra therapies, but we also recognize the need for down time. I tried really hard to have a few days a week where we didn't have any appointments, but that meant doubling and tripling up on other days.  He was almost in tears a few weeks ago talking about losing another summer to appointments due to his stroke, so we decided to cancel everything for the last month of summer before school starts and give him a full break.

A couple of these appointments were biggies - the gait lab analysis and the driving evaluation. Since he had surgery on his foot last summer and has been in pretty intensive PT for the better part of a year, they wanted to re-evaluate his gait. We have obviously seen the improvement, but it was nice to get the official report that the surgery was definitely a success and they are really pleased with the outcome. It was pretty remarkable to see how much better he walked barefoot without his brace this time compared to last. When we went over a year ago, he could hardly put any weight on his left foot and he had this very painful looking hop shuffle he did while walking. This time he was able to put weight on the left foot and is much closer to spending equal time on each foot when walking. The only real concern now is that he doesn't get his left knee entirely straight when walking, it stays flexed at about 20%. They've suggested a new brace to see if it will help.

Due to some of the lingering issues from his stroke, he had to get a driving evaluation prior to being allowed to get his drivers permit in December. While it's still several months away, we wanted to do it this summer so he could start the 30 hours of required driver's ed training without trying to fit it in during school. Our two biggest concerns were his loss of vision (he has no vision on the left half of both eyes) and general response time. I was really impressed at how well he did on several of the items they evaluated him on, especially since he has no prior driving skills to draw on. They did have some concerns with his vision, which really wasn't a surprise. They suggested some vision therapy to help with scanning and it's just going to take more work to teach him how to accommodate when he's driving. They gave him the go ahead to move forward with the permit. Yea! He'll have to go back once he has his permit to do some additional work in a car to see what, if any, adaptations need to be made. It was a good day! I was so afraid they were going to tell him no and he'd have to wait until he was older which would have been a horrible blow.

We have managed to find time to fit in some fun stuff too...trips to the pool, a couple of long bike rides (he has a goal to do a 10 mile ride before summer is over), rock climbing, bowling, Elitches, lots of time on his drums, and hanging out with the neighbor kids. This last month of summer, we're looking forward to some day outings, a jam session with friends, a weekend in Glenwood Springs, many more days at the pool and lots of bike rides.

The Last Four Years

I can't believe it's already been four years since life as we knew it completely got flipped upside down.  It was May 31, 2013 that our sweet Jake came in complaining of a headache and three hours later he was having emergency brain surgery. When I think back to those first hours there are some details I remember so clearly, I will never forget them. There are others that I only remember because they were written here on the blog. I spent an evening a couple months ago going back and reading everything from the beginning. It was pretty overwhelming...he was in such bad shape.

On the flip side I have the joy of seeing where he is today, now 14 and a good half a head taller than me. As I think about the last four years, one thing really stands out. Jake's drive and determination hasn't wavered. He worked so hard to get better in the hospital, hours and hours of therapy every day. He had a goal to be able to walk out of the hospital when he was discharged and he did. He has done things over the past few years that I honestly wasn't sure he'd be able to do and it's been very inspiring to watch him push himself and try things. He has become so disciplined about his home exercise program and stretching. He now makes notes of what he needs to do in his phone and then just does it on his own. All of his appointments, OT, PT, stretching, acupuncture and neuro-feedback continue to be a pretty big part of his life and probably will be for some time. It's something we've gotten used to and it's just part of what we do, just like other families spend a lot of time on sports, we go to a lot of appointments. I'm extremely grateful we have so many great resources and therapists in his life. They have really become friends and trusted advisers, not to mention how much they have helped ease the affects of his muscle tightness with his grow spurts.

And to top everything off - we are now of the verge of having a high schooler! Jake finished 8th grade last Thursday and will be heading to high school in the fall - crazy. All I know is, time is going by way too fast.