Can't Believe it's Been Ten Years

Today we celebrate 10 years since Jake survived his burst brain aneurysm and subsequent stroke. But with that comes a bit of sadness as we are quickly approaching the halfway point in Jake's life pre/post stroke. After December 1st, he will have lived with the effects from his stroke more than without.

I was going through pictures last night, getting extremely emotional thinking back on those first weeks/months in the hospital. So many of the memories are still so fresh in my mind. He was just a little boy when this happened and now he's an adult who has accomplished so much given what he's had to deal with.  

In honor of ten years, I wanted to share ten things I've learned in no particular order. "
 

1. Jake's strength and determination impresses and inspires me daily. 

 2. Watching him struggle to do certain things makes me so proud and breaks my heart at the same time. 

3. While the stroke happened to Jake, it impacted our whole family. It brought us closer in so many ways, but also resulted in some cracks and changed our family dynamic.

4. There are some truly amazing people in this world that we are so thankful to have been brought into our lives due to this experience. 

5. There are also some not so amazing people out there. ☹

6. I don’t need to be Jake’s protector; he is incredibly capable.  

7. How to be resourceful and get really creative finding solutions.  

8. The grace to accept help/generosity of others. Not an easy thing to do as someone who likes to be the helper. 😊

9. A big life event like this helps keep life’s everyday irritations in perspective. (Although I admit I need to reminders sometimes)

10. Breakdowns/sadness are ok and necessary, as long as you don’t stay there.

Thank you so much to everyone who has supported us over the past 10 years. This will likely be my last post. Now that Jake is an adult, I will leave it up to him to continue if he chooses.  

And with that I am going to turn it over to Jake. 

I don’t even really know where to begin. It’s hard for me to comprehend the fact that his whole thing started ten years ago. While a large part of me is proud of how far I’ve come, there is still a part of me that’s sad that I’ll never relive my teenage years and that I’ll more than likely be dealing with the repercussions of my stroke for the rest of my life.

Since graduating high school, I’ve taken a semester of college classes and worked two different jobs, one with the school district and the other in a middle school. Due to my limited time with work and therapy, I have not taken any other classes. Now, I am working from home and recently launched my first online course.

I am also in a band that I started in January, and we have been working on writing some songs and will hopefully be releasing an album later this year. My drumming has gotten a bit better over the past couple of years and I’ve modified my kit in a way that essentially allows me to play one-handed. As much as I would love to have full use of my left arm, I’ve accepted the fact that my left side weakness is something I’ll have to work around for the time being. I have also gone to several concerts this year and have seven or eight more lined up for the rest of the year as of now. I have to say, standing for five or six hours at a concert is something that’s still tough, but there’s no way I could have done that even just a few years ago. It’s times like those that I’m reminded how far I’ve come. Music is one of the things in life that I truly love, so having the ability to experience live shows is just one of the ways that I can show my true appreciation for it. 

 In the future, I’m hoping to continue to grow my business and make it my full-time job. Working full-time made me realize how taxing that is, and even more so because of my limited stamina. In the interest of preserving my energy for the things I love, I’ve decided that working from home is my best plan of action at the moment. And having the ability to build my own business gives me a greater sense of accomplishment. At some point, I’d like to write a book about my life in the hospital and the years since then. My hope with this is to provide a bit of perspective for people who don’t know what it’s like to live through something like this and potentially help people who are experiencing something similar. I would also like to thank everyone for their support over the past ten years. I really appreciate everything, and I know I wouldn’t be where I am today without it. 

 

And then it was nine...

 It seems like these post stroke anniversaries come around faster and faster each year...nine years, wow. Here is a recap on what has happened this past year. 

Jake graduated high school on June 8th! I was so thankful we were all able to attend in person. Up until just a few weeks before, it was looking like only 4 of us could go which would have left out his  grandparents. We then found out about a week prior that 8 of us could attend. We were so incredibly proud of Jake and how well he did in high school. 

He started his internship with Cherry Creek School District in the IT Department last summer and found he really liked it. He was able to get hired on as a temp employee through December. 

He also took classes throughout the fall at Community College of Aurora. 

I mentioned last year about the foot surgery he needed to have due to a lot of pain he'd been having in his foot. He opted to wait until winter break so it wouldn't interfere with school and work. It was a pretty extensive surgery and he was in quite a bit of discomfort for a few weeks. He also decided to get his wisdom teeth pulled while he was recovering, he just wanted to get everything over with. It did not make for a very fun winter break for him!

Jake started a new job with the school district in January working at Campus Middle School as IT Tech Support. He also started PT on his foot in early February. Working full-time and doing PT, he decided to take the semester off from classes. 

We have been so pleased on how he has recovered from the surgery and he's doing things he's never been able to do. His PT has him doing one legged squats on his left leg (the side he has foot surgery on), can balance on that foot, and has gained a lot of strength. The best part of it all is he is pain free. He and Todd recently went to Florida for a 4 day music festival and not only walked 7-8 miles each day, but stood almost all day and had no pain. I would have been wiped out! It is so amazing to see him able to walk around the house without his brace and have a flat foot...no rolling onto the side of his foot, no limping from pain, just walking. 

I am loving being the parent of a young adult. Jake is becoming really independent and is so responsible. I've always know how capable he was, it's just really cool to see it all happening right in front of me. 

Another Foot Surgery

We are asking for prayers and good thoughts for Jake tomorrow morning as he undergoes a second foot surgery. He's been having issues off and on the past couple of years and his discomfort walking has gotten to the point he is willing to have another surgery with hopeful, but no guaranteed outcomes. The muscle tone and tightness in foot is very unpredictable which make surgical outcomes a little more uncertain. He came to the decision at the end of the summer after meeting with his Orthopedic Surgeon, but decided to wait to have to have it done during winter break from school since he's already off for five weeks.

According to the pre-surgery notes, he is having:

Radical Plantar Medial Release

Tendon Lengthening

Achilles Lengthening – Triple Cut

Anterior Tibial Tendon Transfer

Midfoot Osteotomy

These are essentially 4 different procedures to lengthen and move some of the tendons in his foot. The necessity of the last one will be determined once he's in surgery and is a bone fusion to some of the bones on the top of his foot. He'll be in a cast for the next 6- weeks and non-weight bearing for 3 of those.

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. :-)