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 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. :-)

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.

Snowboarding

If you have followed the blog for awhile, you may remember we tried to take Jake snowboarding about 8 months after his stroke and things didn't go quite as planned (you can read that post here). It's something I've really wanted him to try again since he enjoyed it so much pre-stroke. We started talking about it again after Christmas and he decided he was ready. I called around to several ski areas that offer adaptive lessons and we decided on Eldora. It's kinda funny we ended up there since it's the first place we took the boys when they first started skiing/snowboarding and were really pleased with the lessons back then. At the time, I had no idea they had an adaptive program but I was really impressed with their concern and interest in how they could best help Jake when I talked to them on the phone. 

We went up on Thursday since the boys were off school. I asked Jake how he was feeling the night before and he said he was both excited and nervous. I have to admit I had similar feelings. I was excited and hopeful things would go well but had that tiny little bit of doubt they might not.

I'm happy to report that the lesson went great! He had two amazing instructors who worked really hard with him to teach some of the fundamentals of how to work with his weaker leg and gave him the opportunity to do a little bit of snowboarding too. They started on a really small hill and within an hour went over to the bigger training hill. Watching him having fun and being able to go a little way on his own filled my heart with so much joy. Here is about a one minute video clip if you want to see it - snowboarding.

The other super cool thing was Luke. I really wanted him to be able to enjoy the day too, so he and Todd went skiing during Jake's lesson. They would come to check in off and on and see how things were going. He was so supportive and excited to see Jake doing well. He didn't complain that he was missing out on ski time or that he and Todd had to walk quite a ways (in ski boots) to come check on Jake. Made me so proud of both of them. We're going to go up one more time over spring break, can't wait! 

How it is already 2017?

Time really needs to slow down, that or I need to stop being so busy. Here were are again, two months since I posted. Yikes.

Jake had his 4 month post op appointment in mid-November and his surgeon was really pleased with his healing and progress. All Jake's therapy and work at home has really made a big difference in his walking. The doctor mentioned we could look into changing his leg brace again to something less supportive and more flexible. Talk about full circle...it's the same kind of brace he was given when he was discharged from the hospital. It's made of carbon fiber, fairly narrow on the back of the calf, but it's real benefit is the little bit of spring it gives when stepping from heel to toe. So we've gone from carbon fiber to more rigid and supportive to very supportive full leg to surgery to rigid and supportive  and back to lower profile. We're hoping to get him fit for the new brace in the next month or so since we're tweaking a few other things and don't want to change too many things at once.

We've recently discovered Jake's left leg is about a 1/2" shorter than his right and could be affecting some of his gait pattern. It's a pretty common thing, but when your gait and walking are under a microscope, one tends to pick up on things that would be normal nuisances for someone else. We're trying a small lift in his left shoe to see if helps even things out a bit.

With all the focus on Jake's foot/leg post surgery, we got off schedule with botox for his arm. We normally go every three months and didn't make it in for six months. His bicep had gotten really tight and we noticed the dexterity in his left hand wasn't as good. He got botox back in December and is now in 8 weeks of OT to see if we can't get things working a bit better. He doesn't seem to be responding to the botox as well as he has in the past, but I'm hoping it will just take some time and exercises to loosen things back up.

We're making time to fit in some fun stuff too around all the therapy appointments and went rock climbing yesterday. Jake needed a little support while bouldering (free climbing with the ropes), he did a really good job using his left leg and was trying to use his left arm. It's a good thing the wall wasn't any higher or Todd couldn't have reached!

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.