We Now Have a Teenager

I have these moments sometimes when I pause and wonder if everything that has happened to Jake has just been a bad dream. There is no way our son had a brain aneurysm burst and very nearly died. He hasn't had to go to hundreds of appointments/therapies. He can't really have to deal with the struggles he has every single day. I'm going to wake up and have things back the way they were. Most of the time, I think I have a pretty good handle on our life, so when these thoughts enter my head they honestly surprise me. You would think two and a half years would be enough time to accept the reality of his situation.

I think this most recent round hit me because I was going through old pictures on Wednesday, the night before Jake turned 13. Going through pictures always makes me nostalgic and shocked by how quickly time goes by. When I got to pictures of the weeks leading up to his aneurysm bursting, I found myself getting really emotional. None of us had any way of knowing how drastically things would change on May 31st. I look at those pictures and he was so carefree and happy, like most kids his age. The picture of him in the ocean was a few months before when we were on vacation. I remember he and Luke running in and out of the waves and racing down the beach...they had so much fun together. Jake is so much more catious now and not nearly as carefree. I get sad sometimes wondering what his life would be like now if this had never happened. I think it's normal to have those "what if" moments, but I try not to let myself stay there too long. It doesn't do any good and it's not our reality. I just as easily go to the flip side and then feel guilty becuase I should be (and truly am) thankful that he is doing as well as he is. Things are just different now.

As I look at him now 13, I am so proud of the young man he is becoming. He has incredible strength, fight, and determination. He is quick with a hug, he's gentle and kind. He teases me about how close he's getting to be as tall as me (he's within in about an inch now). He loves his brother more than proabably anyone else on earth and likes to spend time with his family. He's got a great laugh and wonderful smile.

I cannot wait to see what life has in store for Jake...he's going to do great things.

November Update

Poor Jake, he's caught his first cold of the season and it's probably thanks to me. I hate to see him sick, everything just slows down so much. His walking isn't as affected as it has been in the past, but I am really noticing his response time is much slower with this cold. It makes sense, I know my brain slows down when I'm congested so it's going to hit him even harder. We're doing everything we can to help him get over it, so hopefully it won't last too long.

With some of the walking issues he's been having we had a few PT appointments this week. He had taken a break since the end of summer and we had planned on doing a mini-intensive session over winter break. We decided to move that up to see if we could take advantage of the botox he got about a month ago. It was interesting, his PT measured the angle of his foot/ankle to track his progress. She measured it this week and it was the same angle after the botox as it was this summer before botox. What that means is the growth spurt he's going through is affecting the tightness in his foot even more than we thought it was. This round of botox just brought him back to what we thought needed treating this summer. Even with more botox, he can't get his foot all the way flat, it pulls to the outer edge. She's trying some foot taping to help hold it in place but doesn't want to do it too often because tape can be hard on his skin. Not quite sure what our plan will be going forward once the botox starts to wear off again...

He also had to be fit for a new leg brace this week since he's outgrown the one he at the end of  February. Both the orthotic specialist and his PT recommended he get another full leg brace to offer him the extra knee support while he's growing, so that's what we're going with. This one will not be in two pieces like his current one. We didn't end up utilizing the take-apart function to give him the choice of full leg or below the knee, so the new one will be a little more streamlined. I hope it doesn't take too long to come in...that's the hard thing with the braces, they usually take 3-4 weeks. By the time you realize they need a new one, it's getting too small but it takes another month to get here.

Veterans Day Parade

We were so honored to be invited by Adaptive Adventures to be in the Veterans Day Parade today. They are the group that we rode recumbent bikes with this summer at Wash Park and who hosted the day camp at a local lake where Jake got to waterski. They are such an amazing organization giving disabled kids and vets the opportunity to participate in various sports. We took our two bikes and they let us borrow two of theirs. Luke wanted to try the hand cycle, so he and Todd rode those and Jake and I rode ours. They got quite the workout powering their bikes through Denver with just their arms!

I haven't been in a parade since I was in marching band in high school. This was quite a different experience. I was on the verge of tears the entire route seeing all the people along the way who had come out to honor our veterans and were waving flags. I wished we had been able to watch the parade. They organized it by different conflicts in military history: Revolutionary War, Civil War, WWI, WWII, etc., we were in the Desert Storm section. There were so many groups participating and the organizers did a great job taking everyone through our military history. My mom and dad came and said it was a great parade. I was so glad they were there and able to take all these pictures for us. It's not every day you get to ride a recumbent bike on the streets of Denver and go by the capital! You couldn't have asked for a nicer day in November, it really was an amazing experience. I feel very fortunate we were able to participate and help honor our veterans.

I think their dad serving in the Air Force and Air National Guard has definitely had an impact on both the boys, especially as they are getting a little older. Todd was deployed twice since they were born, once when Jake was 3 months old and again in 2009 when Jake was 6 and Luke was 4. We were lucky he was only gone for about three months each time, but I remember it having quite an impression on the boys at the time. Both Jake and Luke are taking part in their respective schools Veterans Day programs this week. 

I would like to thank all the veterans and active military for your service and sacrifice to protect our country.  

More Botox

Jake had to get another round of botox on Thursday to help with the tightness in his leg and arm muscles. He had been walking so well towards the end of the summer and even spent quite a bit of time out of his brace at home. The past month, we've noticed a decline in his walking and his left foot was really leaning towards the outside again. It's gotten to the point that it's really hard for him to be without his brace. The botox is supposed to last about three months and his started wearing off at about two months. We were pretty frustrated and I started wondering if there were other options we should start to consider because maybe the botox was no longer effective.

Come to find out when you go through a growth spurt (which he's in the middle of, it seems like he's growing overnight), muscle tone is worse. I don't know why this didn't occur to me before, but it makes perfect sense. When you grow, first the bones grow, the muscles get stretched and then they grow. Both our boys have always had really bad growing pains, so when Jake is already tight, stretched muscles from growing are going to make him even tighter. When I talked to his doctor, he said he has kids that only need botox during growth spurts because their muscle tone gets so bad. Jake needs it regularly, so he's just got a double whammy right now. We're hopeful it will kick in within the next week so things get a little easier for him.

On a totally different note, Jake came home on Friday with the "Student of the Month" award from school. It took a bit of digging to figure out what it was all about...each month one student is chosen per team (there are about 120 kids on a team) by their teacher as the student that exemplifies Respect, Integrity, Safety and Excellent (R.I.S.E.) and Jake was chosen for October. I didn't even know the middle school did these type of awards. :-) The really cool thing was the timing of the award. Luke had received a similar award (Leader of the Pack which is given to one student 3rd-5th grade each quarter) at the elementary school the previous week. Makes for one proud mom.

Jake Got a Bike!

Jake is now the proud owner of a recumbent trike! You may remember that back in the summer, we went on a few bike rides with Adaptive Adventures and Jake loved being able to bike again. We started doing some research to see if we could find one for him. Because they are custom made and have really high-quality parts, they cost a lot more than your average bike, especially a kids bike. We looked into buying a used one, but due to Jake's left-sided weakness, he needed some additional modifications such as having all the gear shifting done on the right side, and we weren't finding anything. I started doing some research and found some companies that offer grants for adaptive sports equipment and got to work filling out the applications.

We found out in August Jake had been awarded two grants and they would cover the cost of the bike. We ordered it the next day and it came in this week. It's been a very long seven weeks of waiting...

To say he was excited would be a major understatement. His face lit up when we walked in the bike shop yesterday and they brought out his bike. He hasn't been able to ride for the past two years and like most kids, it was something he used to do all the time. We feel so fortunate that Jake was given these grants. Being able to get this for him and give him the chance to fit in and take part in activities with his friends is a huge gift. The really cool thing about this particular bike is it can grow with him. Even if he ends up being 6'2", adjustments can be made and since it is so well made, it should last him for many years.

While we were waiting for things to be tweaked, the owner mentioned he had recently got a really good used trike in on trade. Luke had a lot of fun this summer riding with Jake and we had tossed around the idea of trying to get him one as well so they could ride together. Luke decided he would rather get a mountain bike, so we hadn't thought too much about it since then. Getting to cruise around the parking lot testing it out reminded him how much fun it was to ride. The owner was offering us a really good deal on it and when we realized that with some minor adjustments, all three of us could ride it, we decided to get it too.

By the time we got home last night (the bike shop is in Colorado Springs) it was almost dark so the boys were only able to ride around the cul-de-sac for about 20 minutes. We promised we would go on a bike ride this morning. Jake came into our room at 7:30 dressed and ready to go asking when we were leaving. I hadn't intended to be out quite that early but knew he was excited so we got moving. It was so much fun to be able to go on a ride as a family again. He was really getting the hang of shifting and was even able to get up some moderate hills. Both the boys spent a good portion of the day out riding in the cul-de-sac with the neighbor kids. It was tough this summer to watch all of them ride while Jake either sat on the sidewalk and watched, or walked around with them. I loved being able to see him do things he used to do, but now in his own way.

Roundup River Ranch

I am sitting here with an incredibly full heart and so many good memories of the weekend we just had at Roundup River Ranch. For those of you that may not be familiar with the camp, RRR is located outside of Gypsum and is a camp specifically for kids with a serious medical condition. There offer different sessions depending on the issue - kids who have cancer, kidney disease, heart disease, liver disease, neurological disorders, etc. Then in the fall, they offer family sessions where they invite the entire family to come experience camp with the affected child. It's a place that is structured to allow the kids to be kids while in a safe environment with other kids who are like them. This was the first time we've attended and the boys are already asking if we can go again next summer.

There were so many components to the weekend that were simply awesome. First and highest on my list was good quality family time. We fished, did archery, canoed/kayaked and went on a rock-climbing wall/zipline...and that was all before lunch. I was so proud of both Jake and Luke for getting up to the top of the rock climbing platform. It was a REALLY tall rock wall and Jake tackled it and pushed himself until he made it to the top. Luke conquered his fear of heights by climbing up the telephone pole and going across the a tightwire holding onto ropes. They both zip lined down and were grinning ear to ear the whole time. After lunch we played games, got to paint some pictures and then went horseback riding. The evening ended with a talent show where both boys decided on their own they wanted to play music but do it individually and not with each other. Luke borrowed a guitar they had and Jake used their drum set. It was a pretty proud moment to see both of them up there performing solo in front of close to 100 people...they did fantastic.

The staff at the camp is like none I've ever seen. There was such a genuine joy and happiness that was  just contagious. They are kind, caring, generous, fun people who put the kids first and create experiences/opportunities for them that let them shine. They encourage the kids to challenge themselves, then celebrate their success. They really listen when the kids talk and don't make them feel rushed. They'll sit and play games or offer suggestions for other fun activities if they feel the kids getting antsy, or just sit and rock in a rocking chair with them if they need a rest. One of our cabin counselors is from Boston and worked the summer sessions as her summer job. She's back in school now but flew out this weekend to be part of family camp because she loves it so much. Pretty impressive. Luke really bonded with one of the counselors, Molly. He said tonight at dinner that his favorite part of the weekend was the staff and he was "really going to miss that place."

Today before we left, they do this thing called the "Web of Gratitude." Campers can choose to share something that they are thankful for from camp and they wind yarn around a hula hoop creating a beautiful web. I was quite surprised when Jake raised his hand and cried when he said "I got to play drums for the first time by myself in front of people." Not to be fair, we had just watched a slide show of the weekend so I had already shed quite a few happy tears. This camp offered him a safe place with zero judgment to put himself out there and it was so cool.

The other great part of the weekend was spending time with other families whose lives have been affected by a child with some type of neurological disorder. While the specifics of our situations may have been different, many of the challenges and struggles we've faced are very similar. Everyone there could relate to your life on some level.

We're hoping having had this experience as a family, Jake might want to go next summer for the kids session. He's made a few statements already today that lead me to believe he's thinking about it, so we'll see.  Either way, we will definitely try and go back again next fall for the family session.

Test Results

Jake underwent some neuropsychological testing back at the end of July. It's a pretty thorough battery of tests that cover all kinds of things from spelling to working memory to reading comprehension to processing speed and many others. He had the same set of tests just six months after his aneurysm and this one was a follow-up. The intent of these tests is to give us an idea of what cognitive areas his aneurysm affected and suggestions for accommodations that can be made to help him both in everyday life and at school. Todd and I were finally able to meet with his doctor of Friday to get the results.

I don't think I'm ever going to get used to getting the results of tests and I always leave feeling emotionally drained. Instinctively, I already know what they're going to tell us. I see both his successes and challenges every day so nothing is ever really a huge surprise. We know these assessments are important so we can continue to support him and make modifications as needed. But it is still difficult to hear about the areas that your child continues to struggle with and see the actual numbers on paper that denote the skill level on both sides of a bell curve.

The interesting thing is, I'm sure many of us if given these tests would have some things we're good at and some we aren't. In fact, there were a few examples he showed us and Todd and I both looked at each other with a puzzled expression not knowing the answer. Unless a "need" is determined, most people never take these types of tests and have their deficiencies so blatantly pointed out to them.

We try really hard to focus on his progress and accomplishments and while we aren't blind to the areas that are more difficult, we don't dwell on them. Getting his test results makes me question if we're doing all the right things to help him be the most successful he can be. There are so many things that need to be addressed on a daily basis that at times it just gets to be almost overwhelming for all of us. We don't want his life to be overscheduled and over structured to fit everything in - OT exercises, PT exercises, stretching, neurofeedback, acupuncture, queuing him on his walking, doing "mental" exercises/games...the list goes on and on. He just needs time to be a regular kid.

I don't mean to infer it was a bad report, he's made progress in all areas and his doctor thinks he'll continue to improve. I have to admit there is just a little bit of sadness when you compare him to where he was prior to all this and look at all he has to deal with. When that passes, I return my focus on being truly grateful and blessed he's doing as well as he is.

Trying to Let Go

As a parent, you always hope you are doing the best thing for your children. Whether that is giving them some independence to figure things out on their own or stepping in to help solve a problem. When you have a child who has had a serious medical issue, it adds a whole extra layer of complexity to many of these decisions.

Jake being 12, almost 13, is at a time in his life when most kids his age start exercising more and more independence. I've seen Jake start to do this in certain areas the past several months. It's hard because due to his stroke there are things he simply cannot do on his own yet for a multitude of reasons, like go to the pool with his friends or hang out at Elitches for the day. I worry at times about him monitoring his stamina. He gets tired easier and doesn't always regulate himself because he wants to be just like the other kids and keeps going and going. I hope that the kids he's with think to slow down or suggest a stop to rest, but that isn't a fair expectation to put on another child, especially at this age.

Some of the things I worry about I'm told are typical for a 12/13-year-old boy and have nothing to do with his stroke. With Jake being our oldest we haven't gone through these stages yet, so what I think is a result of his brain injury, is really just everyday 12-year-old issues. Things like not advocating for himself at school, being unorganized at times, or forgetting a homework assignment. We're trying to implement tools where we talk about an issue at home and how he could deal with is, but he then needs to carry it out. Sometimes it works, sometimes it doesn't.

I know I'm more protective and involved at times than I probably should be. With all he's been through, it's hard to let him make mistakes and just figure things out. I don't want to see him hurt, physically or emotionally. Part of is the protective mom thing, he's already been through so much and continues to have challenges every single day, why put him through more. At the same time, I don't want to make life worse for him in the long run because I'm always there.

Ah, the joys of parenting...

7th Grade and Indoor Skydiving

Jake is now officially a 7th grader, so hard to believe. The start of school was far less stressful than last year, which was a very welcome change. Being in his second year of middle school, he knows the ropes plus he has made such remarkable process in the past two years.

Todd and I were talking the other night about his start of school in 5th grade which was only a week after he got out of the hospital. His teacher met us at the school on a Saturday so we could figure out the best way for him to navigate around. He needed to use the bike to get from the front of the school to his classroom, could barely get his chair pulled out by himself and needed a great deal of support just to get from one place to another. Initially, he was only able to attend school for two hours a day and even that wiped him out. In retrospect, we probably sent him back to school too soon, but he really wanted to go since it represented getting back to real life. It was probably too much physically, but I think it was good for his mental well-being.  At the time, we were taking things day by day and making the best decisions we could.

 We did manage to sneak in one last bit of summer fun before the boys started back to school and took them indoor skydiving. It was something they’ve been wanting to do, so we made it a reward for reading 1000 minutes this summer. I think they were both excited and nervous at the same time. Being the last to go in their group increased the anxiety. They each got to do two one-minute flights. Luke was a natural and it was so cool to see how well Jake did keeping his left arm out straight (You’re supposed to get in a superman position to “fly”). The only downside is, they are now hooked and want to go skydiving for real. Luckily they aren’t old enough so we can put that off for a few years. :-) 

Yellowstone

We spent the last week in Jackson Hole and Yellowstone for some unplanned, but much needed time away. My grandfather passed away and his funeral was in Montana, so we decided to  add a few days to our trip and take the scenic route. The park was pretty crowded (as you'd expect in July), but we still enjoyed ourselves and got to see a lot of sites.

A few weeks before we left,  Jake had another round of botox, a higher dose than he's had in the past. His PT and Rehab Dr. are trying to see if it will be more effective and last longer than the dose he's been getting. The tone in his foot is still causing problems with his walking since he can't get his foot flat. They've started having conversations about possible surgery to cut the tendons and release the tightness, but want to get a little more aggressive with the botox first since it's less invasive.

It seems to be working. He was doing so well before we left  for Yellowstone, his PT told him to walk as much as he can without his brace. He was a little nervous at first because he is so used to having the brace for support, but he's doing really well. It's such a good way for him to strengthen his left leg and increase the range of motion in his ankle. We stopped by the grocery store on the way out of town and I shot a couple of  short video's of him walking. http://youtu.be/d7wlVm3YdFE Seeing him walk this well in a public setting without a brace literally brought a huge smile to my face and tears to my eyes. Due to the sheer volume of walking we did on vacation, he wore his brace most of the time during the day. But even then, I was amazed at his stamina. We took a couple of different hikes that had pretty good inclines along a rugged trail, he did amazing. There is no way we would have attempted something like that a year ago. Óur plan for now it to have him wear his brace to school, but try and go without it at home and on the weekends if we don't have too much planned. Excited to see how is walking continues to improve without the brace.

Rush Concert

I don't even know where to begin...what an amazing night for Jake. He finally got to see his favorite band, live in concert, just a few weeks and two years short of when was supposed to go the first time. Not sure if it made it any more special for him to be there now, but it sure did for me.

I was looking back over the previous few months of blogs and realized I hadn't updated you on a couple of things regarding the concert. You may remember that due to an outpouring of letters from friends and family, the band sent Jake a whole bunch of cool stuff while he was in the hospital. They also mentioned we'd be guests of the band next time they came through town. We were hopeful but didn't expect them to remember since it was two years later and they do have a few things going on. :-)  The band's management team came through with tickets for all four of us and an invitation to a meet and greet before the concert. We had no idea where our tickets would be and didn't find out until we picked them up at will call last night. To say we were stunned when we opened the envelope to see tickets 12 rows back from the stage would be a MAJOR understatement. We never expected such good seats and couldn't believe it.

About an hour before the concert, we got to meet two of the band members and get our picture taken (Neil Peart the drummer wasn't there). I was so nervous and excited for Jake, it felt like we waited in line forever, which in reality was only about 20 minutes. It was very quick but pretty cool knowing we were standing there getting our picture taken with some of the band. As we were walking away, Alex Lifeson (on the left) gave each of the boys a guitar pick which was pretty awesome. Luke kept saying "I can't believe I have a guitar pick handed to me by Alex Lifeson!"

From there we headed to our seats to wait for the show to begin. As soon as the lights went down and the first few bars of music started to play, Jake was beaming. I don't think he could have smiled any bigger. I tried to get a picture, but it turned out blurry. Within minutes, he had his phone up like everyone else taking video and pictures. We had two very tall people in front of us and the boys were having a hard time seeing. The guys behind us suggested we let them stand on the seats which was very nice considering the boys blocked much of their view. Luke stood up there for one song but then let Jake and it was hard to get him down. :-) I was amazed at Jake's stamina during the show, which was about three hours with a short intermission. He stood the majority of the time, singing along to just about every song and air drumming away. It was so cool to see, Todd was definitely enjoying himself as well. While admittedly, I am a not nearly as big of fan, I am so glad I was able to be there to experience it with Todd, Jake and Luke. I have huge respect for the talent and musicianship the band has. They put on a really impressive show.

It was a definitely a night we will all remember for a very long time. I'm so glad this was Jake's first concert experience too. We feel very blessed to have been given the opportunity to experience it like we did. Here is a little video clip of all the boys enjoying the show and of course part of Neil Peart's drum solo. Jake would never forgive me if I didn't includ that. :-)  http://youtu.be/8SFhGYAJmgA 

P.S. Those pink things in the boys are are earplugs courtesy of mom. :-)

A Busy June...

It's been a busy couple of weeks at the Morgan household. Jake just finished his three week OT/PT intensive, he's had five therapy appointments a week in addition to aquatic therapy, stretch therapy, acupuncture and nuerofeedback (the last three being part of his year round schedule). It's always amazing to me to see how much progress he makes during these mini intensive sessions. This one was focused on strength training in his legs, reducing the tightness in his left arm and better grip release. They push him really hard too...fast walking on the treadmill, single leg presses, balancing on his left and going up/down the stairs. I honestly don't know how he continues to have such a good attitude and work so hard at all of his appointments, especially at 8:00 in the morning, but he does.

We did manage to fit in some fun stuff too. Week before last, he and Luke attended a day camp through Adaptive Adventures. They got to water ski, paddle board, kayak and bike. It was all adapted so Jake was able to participate in everything. I couldn't quite imagine how he would be able to water ski, they had a little chair attached to a mono ski with two outriggers off to the side for balance. He got the full experience of skiing behind a boat but in a completely safe way. I also love that they include the siblings, Luke didn't get to water ski but he did get a "really awesome wild tube ride" behind the boat. They were completely wiped when they got home but they both couldn't stop talking and telling me all about it. They ask that a parent attend with kids under 14, so Todd went and got to experience all the excitement first hand (and take pictures for me.)

After that long day at camp in 90+ degree weather, the next morning Jake asked to go bike riding again at Wash Park. We hadn't planned on going since we figured he'd be too tired, but off we went. We all biked together this time and he made it about 3 1/2 miles before his legs got too tired.

This past Saturday we went to Cave of the Winds in Colorado Springs. My parents had taken Luke
during one of their outings while Jake as in the hospital. It's something Jake has wanted to do since last summer. It's a 45 minute guided tour, about a half mile with 200 steps and a lot of narrow winding paths on sometimes slippery ground. It's a really cool tour and he did awesome. If you haven't been (and aren't claustrophobic) I'd highly recommend it.

We finished our day in the Springs by visiting a bike shop that specializes in recumbent bikes like the ones Jake's been riding at Wash Park. Todd and I have been talking about getting one for Jake and needed to get more education on some of the different features and what would be best suited for him. It something he seems to be enjoying, is great "fun" therapy, and would allow us to start taking bike rides again as a family. The bikes are quite an investment, so we want to get something that will last and grow with him. The store was really helpful and we feel a lot better equipped to make a decision. We all got to take a spin around the parking lot, they are really fun to ride.

Hard to believe June is almost gone, hoping July is a little less hectic!

Bike Ride at Wash Park

We had a great start to our weekend on Saturday morning at Wash Park, so much so I was on the verge of happy tears. This was the first free Saturday morning we've had in months and it was so nice to spend it in a beautiful park as a family.

For the past 9-10 months, stretch therapy and acupuncture have occupied most of our Saturday mornings because there just wasn't time to schedule them during the week. With summer here, we decided to move them to a weekday so we could do some other things on the weekends...that led us to Wash Park which is a really popular park near downtown Denver. We met up with Adaptive Adventures and the Children's Hospital Sports Program for a bike ride. We did one with them last summer and it went pretty well all things considered. I mentioned to Jake they were offering the rides again this summer and he said he'd like to try it again. 

We could not believe how much better he did this time. He had no issues holding on to the handle with his left hand and was even able to brake a little. It took a little work to get into a peddling rhythm, but once he got it, he just took off. As an added bonus, it was great therapy for his left leg. The really cool thing was they let Luke use one of their bikes too so they were able to ride together. Todd had also brought his bike and I figured he and Luke could go ride and I would walk and help Jake like I did last time. Things

didn't quite happen that way, Jake didn't need my help. The three of them were all off riding and I couldn't keep up on foot, which was actually really cool. I got to follow behind them watching them ride together and it literally filled my heart with joy. It was a gorgeous morning, the park setting was amazing and they were just two brothers cruising along....it all made me so happy. There were of course times when Luke turned into a speed demon, but then he'd stop, wait, and ride with Jake for awhile. Todd told me later (since I was out of earshot most of the time) that Luke would give Jake encouragement to get up a little bit of an incline or go a little faster, and Jake responded. They rode about 2 1/2 miles around the park and Jake was wiped out by the time they were done. He did tell me as soon as we got back to the car that he wanted to come again. Here is a really short video clip I was able to get after one of their stops http://youtu.be/AC5RcXsGL-I. 

Can't wait until next time when we can all ride together!

Two Years...

Today is two years since Jake had an aneurysm burst in his brain leading him and our family down a very unplanned path. Looking back it's really hard to believe it's already been two years, this past year has gone by especially fast. The doctors initially told Jake it would take a year to heal. I don't know what they determined "healed" to be, but I am really thankful he didn't stop his recovery at the one year mark since he's made some huge strides this past year.

On this second anniversary, I wasn't nearly as emotional as I was last year. I didn't find myself thinking about the events of that evening on May 31, 2013 as certain times passed on the clock. I was watching him play outside this afternoon and am pretty amazed at how far he's come. The kids had a lemonade stand and were up and down the street several times getting supplies. There is no way he could have done that a year ago. Today, I am going to focus on and celebrate all the progress Jake has made in this past year instead of dwelling on the things that are still a struggle.

Jake's transition to middle school went better than I could have ever hoped for. Yes, there were a few bumps along the way, but as he's just a few days from finishing 6th grade I'd have to count this year as a success. His independence grew as well as his self advocacy.

His walking has continued to improve and he is actually starting to run a little for short distances. There was only one time the entire year that he needed his wheelchair at school and that is because he got sick.

His stamina and endurance have really improved. We were so concerned about him getting around the middle school because it was so big and he did get tired earlier in the year. Now, it's really not a big deal. A year ago, we used his wheelchair consistently when going places like Costco or Target and now he doesn't need it. He can also be outside for several hours at a time hanging out with friends without getting overly tired. We also avoided doing certain activities because we were worried it would be too tiring, not so much anymore.

We're beginning to step back, not hover and watch over him quite as much. So much of his life has been under a microscope since this all happened and at times it was hard to just let him be. We were at a friends BBQ recently and he was out of our sight for huge chunks of time. It felt a little odd and good all at the same time to not go check and see how he was doing, but he didn't need us to. He was just hanging with the other kids. So many things he's going through now are normal for a 12 year old boy and have nothing to do with his aneurysm/stroke. Hearing some of those things was a big eye opener for us at his IEP meeting about a month ago.

Jake and Luke's relationship is continuing to evolve and change. I've caught a few moments of Jake stepping back into the big brother role which always warms my heart.

Jake is getting a little less fearful and more willing to try things. He and our daredevil Luke are still miles apart, but it's good to see him stepping out of his comfort zone.

Jake has grown this year in so many ways, there are countless little things that I didn't mention. Some of them are recovery related and some are just growing up, but both are good to see. We will continue help him in every way we can with therapies, support and space when he needs it to figure things out on his own. We are so thankful and feel very blessed that he has come as far as he has and can't wait to see what the next year brings. Thank you to all of you who continue to follow Jake's progress offering your love, prayers and support.

Music Glove

Jake started some new more engaging therapy a few weeks ago that we are hoping helps improve his fine motor skills on his left hand. Over the past several months, we've seen him try to use his left hand more and more doing things like opening the car door or holding his water bottle with his left hand and opening it with his right. He does pretty well grasping things but still really struggles with the release/opening of his hand. We've also noticed his hand control really depends on the position his wrist is in, he gets fatigued keeping his arm and hand straight and his wrist falls causing his hand to go down. This is a big issue when he drums so he has a small wrist splint he uses which seems to help.

Several months ago I saw on Facebook of all things, an add for a Music Glove (I still find it a bit creepy that facebook knows what to advertise to me based on what I search for on the internet). It's a rehab glove that isolates work on the pinch and release for the thumb and each of the fingers all done to music. As much as Jake likes music, we thought it might be a good thing to try. To get the fine motor skills back takes tons and tons of repetition and this seemed like a more engaging way to do it. I shared it with his OT and she did some research and thought it looked interesting, but we weren't sure he had enough isolated finger movement at the time to use the glove effectively. I brought it up to her again about a month ago and we decided it would be worth a shot. We talked to Jake to make sure it was something he was willing to take initiative to do 5 days a week working up to 20-30 minutes each session. He thought about it for a couple of days and came to us and said he wanted to try it.

It's pretty cool, he gets to pick which pinching grip he works on and if he wants to work 1, 3 or 5 grips/pinches per song. As the song plays, a little dot shows up on the screen and when it gets to the of buttons at the bottom showing the grip, Jake has to pinch. In the video, Jake is working on his middle finger and thumb, you can see the green dot coming down the middle of the screen. The sensors on the glove tell him if he's early, late or gets it exactly right. We got it two weeks ago and I took a video of his pinching without the glove and the first time he used it  https://youtu.be/PKZqNhlzC7I. The thing I've found interesting while watching him is how much he moves around when trying to get to pinch, it's like he needs the rest of his body to support what he's trying to do rather than isolating and moving only his fingers. He also holds his left wrist with his right hand for added support. First time he tried it he got 32/58 which is pretty darn good, the manual said it's normal to only get 5 or 10 on the first attempt.

We've been really proud of his dedication so far to "practicing." He needs a little help getting the little sensors on, but he comes to us and says he wants to practice instead of us reminding him. We're anxious to see how he progresses over the next several months, I'll be sure to keep you posted. :-)

Certificate of Excellence

I'm adding a disclaimer right up front that I'm going into proud mom mode and am going to brag on my kid. :-)

Back in March right before spring break, Jake came home from school and told me how that day in band his teacher had written a bunch of character traits on the board....team player, dedication, commitment, consistency, hard working, most improved and others. He asked the 40+ kids in the class to vote for which student they felt exemplified those traits. Sounded kind of cool, but I quickly forgot about it. About a week after he got back from break, it was announced to the band class that Jake had received the most votes and got "the award". He wasn't really sure what the award was, but was pretty excited.

We then received an invitation a few weeks ago to an awards night at Jake's school and figured it must have something to do with this award in band. Tonight all the pieces finally came together. One student per grade level was recognized for achieving excellence in each of the following: math, social studies, language arts, science, all the electives, sports or for earning a 4.0 GPA. Jake had been voted by his peers as the 6th grade recipient for band. Pretty cool honor. One, because drumming is so important to
him and two, he was voted as the most deserving of this award by his peers, not by teachers who as adults "get" what he's had to overcome. He was chosen not because he's the best drummer or the most popular kid in the class, but because of his attitude and hard work. Kids, many that didn't know him before this year and probably don't know his history, see him coming to class everyday putting in 110% effort. They see him not give up or quit when he got last chair for the percussion line. (The kids tryout for chair positions and he came in 4th out of 4 kids, it was pretty hard on him.) Receiving any award would have been wonderful, but to see him honored for something that means so much to him was pretty awesome. Can't wait to see what lies ahead for him.

Stay Tuned

I will be posting Monday night instead of my normal Sunday night because I want to share about a big honor for Jake that is happening tomorrow.

Stay tuned...

IEP Meeting

Todd and I had Jake's IEP meeting on Friday and were talking on the way there about how far Jake has come in the past year. (For those of you who don't know, an IEP is an Individualized Education Plan for kids that need accommodations and modifications at school. Jake was put on one after his stroke.) Last year about this time, Jake had just started going to school full days. His walking had really regressed after out vacation and he was having a very hard time getting around at school. I remember how hard it was seeing him struggle, he had to go back to using the bike at school just to get around and they would even bring it out to the car in the morning to help him get inside.

A year ago, he still fatigued really easily and had both OT and PT a few times a week. I so clearly remember his IEP meeting last April. There were about 12 in attendance since we were talking about his transition from elementary school to middle school. We had a lot of concern about how he would handle a new much larger school, several different teachers and everything else that comes with middle school. It's customary for different people who have worked with Jake give a report on his status, and I remember getting emotional during several of them. It was so hard to hear all the areas he had made improvements but still had so far to go.

Fast forward to this year's IEP meeting...it was the first one where I haven't cried which made me pretty happy. :-) I don't know how much of it was I'm getting more used to these meetings vs. he showed tremendous growth this year. We heard a lot of good things and the list of modifications and accommodations is getting shorter. One big thing we took great pride in was hearing how much he is participating in class with thoughtful and constructive comments, and that he is doing really well. Not "doing well considering he's had a stroke," but just really well. There have been a few bumps this year, but overall, it's been a good transition to middle school. The thing we have to remember is a lot of kids struggle with organization or taking initiative for example. So many of the things we worry about are just normal 6th grade boy stuff, but Jake is under a microscope so things seem like a bigger deal. He still has goals he is working towards, will continue with accommodations like extended time on tests and leaving class a few minutes early to avoid crowded halls. He also has the choice of taking a break during his homeroom when he's tired. But he's getting around the school on his own, keeping up with his classmates academically and overall succeeding. His new leg brace has really helped his walking and stability and he is getting more and more use of his left hand/arm. We are happy he is still making progress and will continue doing whatever we can to support his recovery.

Spring Break

The boys were on Spring Break this past week and we decided to take the opportunity to go visit my grandpa who recently moved from Oregon to Las Vegas due to his declining health. Both my uncles live in Vegas and my parents have been there for the past two months helping him transition to a skilled nursing facility. It's been a pretty bumpy road the past few months so this was a last minute trip and unfortunately Todd had some critical things going on at work so it was just the boys and I.

While the main purpose of our trip was to see my grandpa and my parents, we tried to get in a few fun things for the boys too. The weather was really nice the first few days, so my uncles took us out to Lake Mead for some boating. It was the boys first time on a boat and the loved it.

It's so interesting how different our boys are. They were this way before Jake's stroke, but their differences are just more pronounced now. Luke is much more adventurous and would have jumped in the lake at the dock if I let him. He road in the front of the boat where it was the most windy and wet, he was also the first one to get pulled in the inner tube. Jake on the other hand is far more cautious and needs to really think things through first. He wasn't going to even wear his swimsuit since he had no intention of getting wet, sat in the back of the boat a bit more protected and took a long time (and a little bit of convincing) to decide he wanted to try the tube. I was so afraid if we left the lake and hadn't tried it, he would regret it. The water was pretty cold, but they both ended up having a really good time.

They also got to have a guys night out with my dad, uncle and cousin and went to the Medieval show at the Excalibur. They serve pretty big portions of food with no silverware, then watch a jousting match. Jake had jokingly told me earlier in the day he was going to sneak a fork in his pocket (he gets very concerned about germs), so I was surprised when my dad told me Jake just tore into is food like he hadn't eaten in three days.

It was a pretty quick trip but I am so glad we were able to go. We got to visit with my grandpa every day and even took him and Jake for a walk with both of them in their wheelchairs. I was so proud of how patient and well-behaved the boys were when we were visiting him. They didn't complain about being bored or ask when we were leaving, instead they answered his questions (which were often repeated) and just hung out with him. Luke said to me as we were leaving that "Grandpa is a really nice man, I'm glad we got to visit him." Made my day.

Luke

I realized the other day that while this blog is about Jake, his brother Luke has been affected by all of this too and in a pretty big way. This past week Luke had his monthly pack meeting for cub scouts. Each month a different core value of scouts is covered, March was Compassion. They usually do an activity that coincides with the trait and Luke was asked by his cubmaster if he would be willing to talk to the other scouts about he helps Jake cope and their relationship. We told Luke about it and let him make the decision. He and I went on a long walk later that night and a lot of stuff came out about Jake.

The other person who would speaking at the meeting was a mom who's son has disabilities and since they would both be speaking, Luke connected her son and Jake together and said to me "But Mom, Jake isn't disabled." It isn't a label we've really used or think about, a lot of that is because we have been more focused on his recovery and progress. And to be honest, it's a tough label to place on your child. After I thought about it for a minute, I said to him "Jake had a really bad stroke that left him unable to use parts of his body the same as you do, so technically right now he does have a disability." He then asked me if Jake would be at the meeting because he was afraid if Jake heard Luke say he was disabled it would hurt his feelings. (Jake wasn't going.) He also seemed concerned that other people would think of Jake as disabled. I told him the reason they asked him to speak was to share about what he does to help Jake and how some things have changed. It was more about awareness so if one of the other scouts encountered someone "different" they might stop, think, and be more compassionate.

He thought about it a little longer and decided he would like to do it. I told him he could say and share whatever he was comfortable with. I was very antsy waiting for he and Todd to get home from the meeting to hear how things went. When he got home he came and whispered to me that he almost cried talking about Jake and had to take some deep breaths. After they went to bed, Todd and I talked about it and he said Luke did a really good job. We were really proud of him being willing to get up in front of a pretty big group of kids and adults and share some really personal stuff. He has grown up so much the past few years and sometimes seems far wiser than ten. He really is an amazing kid and has definitely got the compassion character trait nailed down.

Free Weekend

Jake definitely benefited from a weekend free from appointments. The boys had a long weekend off from school, so we were able to schedule things so he didn't have stretching or acupuncture on Saturday. Instead he got to hang out with his good friend on Saturday and outside with Luke and some of the neighbors most of Sunday. It was so nice to see him doing normal kid stuff and having fun. It seems like so much of his life is appointments, homework, therapies, he doesn't have a lot of time or energy left to just be a kid.

We did have a small incident today with one of the neighbors, but in a strange way, ended up being a sign of progress. Both our boys have always been very protective of each other and ready to come to the other's defense when they feel their brother has been wronged. There have been a few instances in the past year and a half where Luke has come to Jake's defense, but there hasn't really been a situation where Jake had a opportunity to stand up for Luke like he would have before his stroke. The majority of the time, there is no real confrontation with someone, it takes place instead with Todd and I as part of the conversation of what happened. Luke would get very upset about something that happened to Jake and talk about wanting to confront that person and what he would say. I've seen both of them over the years get very emotional wanting to right a wrong.

Today, the roles were reversed. I won't go into details with what happened, but Luke realized after the kids left that something of his got damaged (by accident), and he wasn't too happy about it. He was really upset and Jake stood up and said in a rather stern voice "I'm going to go talk to _____!" We stopped him from going outside to confront the other child, but it was so cool to see him playing the role of big brother again to Luke. Ever since his stroke, Jake has been more passive and in a lot of ways the boys have reserved roles. Luke is more the big brother that Jake relies on for things. Jake could see Luke was hurting and got mad on his behalf. Empathy and reading other people's feeling is another trait that was affected by Jake's stroke and in a weird way, it was nice to see him upset on Luke's behalf and feeling bad for his brother.

Strange as it is, it was great progress and nice to see.

A New Brace

Things have been fairly uneventful here the past few weeks where Jake is concerned, which is definitely a good thing! He is fully recovered from his cold and is getting around really well.

He got some new hardware a few weeks ago in the form of a full leg brace. A little history...while Jake was recovering in the hospital, his ankle muscles had not yet come back. He couldn't keep his foot at 90 degrees while walking since his toe tended to flop downward. His PT suggested we fit him for a brace. It was below the knee and in two pieces - a hard plastic piece that fit around his foot and a carbon fiber outer piece. The idea at the time was the carbon fiber would give him the spring he needed as his ankle came back to help him flex as he stepped.

Fast forward six months post-stroke to last January. His ankle muscles still hadn't returned but now he had the added issue of excessive tone. The tightness was causing his ankle to roll to the outside of his foot. He did six weeks of serial casting to try and increase range of motion for his ankle. Afterwards, he was fit for a new brace. It was a softer plastic around his foot and offered more support for the ankle (it's pictured on the right.)

Now here we are a year later. While his range of motion in the ankle continues to improve, he is still dealing with the excessive tone. He got botox back in October which helped quite a bit but wore off in about three months. While the ankle continues to roll to the outside, it's taking his knee with it. His PT has been very concerned about the pressure and stress this is putting on his knee and what that could mean down the road. If you've seen him walk, it's almost like his knee gives out a little as he takes a step and is pointed about 10-15 degrees to the left instead of straight ahead. She came up with the idea to put him in a full leg brace which is pictured on the left. It's pretty massive and goes high up on his thigh. It's got metal rods going down each side of the leg which force the knee to point straight ahead. The nice thing about this one is the top part can be removed and he is left with a brace very similar to what he had before below the knee. It offers a little more support for the outside ankle too.

He was excited about the idea of the brace since it was supposed to help him walk better. When we went to pick it up and he saw it, you could see the shock on his face. Neither of us quite realized how big the brace was going to be. He said to me in the car on the way home that he doesn't understand why his braces keep getting bigger, they should be getting smaller. In retrospect, I wonder the same thing, but there was no way to know at the time how long it would take his ankle to recover.  He was also really worried it was going to show under his pants and what it's going to look like when he wears shorts this summer. He got a lot of questions at the beginning of school about his brace and now figures he'll get more. Luckily it doesn't really show under his jeans so that made him feel a little better. The good thing is the brace seems to be helping, we've really noticed an improvement in his walking. Having his knee properly aligned caused him some pain those first few days, but that has gone away. The idea is that his leg will stay in proper alignment after some time due to muscle memory. At this point, we're just taking it one day at a time and are grateful he's got it.

Jake's Going to See Rush!

So first, the big news...we found out about a week ago that Rush is touring again this summer, so Jake is finally going to get to see his favorite band in concert! For those of you who may not know, Jake and Todd had tickets to go back in August 2013. He was still in the hospital, couldn't go and was pretty bummed out. He also ended up having his second surgery that same day. (This picture is from when he was still in the hospital with all of his swag Rush send him thanks to Todd, Luke and several friends sending them letters about Jake's situation.)

We got tickets for Todd and the boys on Friday and Jake is already counting down the days. There is a big red circle on his calendar for July 11th and I think he said this morning it's 160 days away. :-) He's been trying to decide which Rush shirt he wants to wear and offered to lend Luke one "but only to borrow for the concert." I am so happy that Todd and the boys will get to experience this together. Its the first concert for both of them and I think it will be really memorable with how much impact Rush has had on Jake. Even now, it's his music of choice when he needs to zone out and relax. I still don't get how it's relaxing for him, but whatever works. As much as I would love to see Jake's reaction, the cost of the ticket would be completely wasted on me so I opted out and am letting it be a boys night out.

I think Jake has finally just about kicked his cold. He ended up using his wheelchair all last week at school and his classmates were really great about getting him where he needed to go.We were so pleased that it didn't end up being a huge negative for him. The only thing I felt bad about was the concern from two of Jake's teachers that something bad had happened to Jake. (He was out Thursday and Friday and then shows up on Monday in a wheelchair.) I had communicated with his case manager but didn't think to send an email to all of his teachers. It's so different in middle school...word doesn't get around quite as quickly. His walking is looking better this weekend which is so nice to see.

Looking forward to the week ahead...

The Cold Finally Hit

So the cold Jake has been dreading and worrying about finally hit this week. I'm actually surprised he's held off getting sick this long, his last cold was in the Spring. His walking deteriorated again and really slowed him down. We were hoping he was further enough along in his recovery a cold might not be so impactful but he wasn't so lucky. His body just doesn't have enough resources to fight off an infection and work on healing, so his walking gets worse, his arm gets tighter and he fatigues a lot easier. Honestly, it's no real surprise. I know how drained I feel when I'm sick and I'm not recovering from a massive stroke. Luckily, it seems to be a pretty minor head cold and not one of the more serious ones going around.

What makes this a little bit harder than before is being in middle school. There is so much more distance to cover between classes which just adds to him getting tired. We kept him home on Thursday and Friday so he could rest but making up all that missed work is going to be taxing too. We'll do what we can and if it takes a little longer to get caught up, so be it. We talked with him today about going back to school tomorrow and he's worried about getting around and having the other kids see him struggle walking. He asked if he could bring his wheelchair to school. He hasn't had to use it much at all lately and I was proud of him for recognizing that it will help even though he doesn't want to have to have it at school. Now we just need to figure out who's going to assist him with it since he doesn't have dedicated help anymore. :-)

Lunch

I had one of those heart wrenching situations this week that all parents hate. I've mentioned in previous posts that Jake has been having some anxiety issues lately. Just before winter break, I started recognizing some patterns of when his anxiety was hitting while at school. He would text me about stomachaches, headaches, nausea, etc. during his rest time at 11:15 and then again at 12:05. I think his rest time was allowing him too much time to think about things and  he would start worrying. At 12:05, he's at lunch...that's what I witnessed on Friday.

I was volunteering in the cafeteria, and at 12:05 they open the doors so the kids who want to can go outside. The entire table of kids he eats with got up and went outside leaving him sitting there by himself. In talking with him these past few weeks, I knew it was happening, but seeing it first hand was a whole different situation and it was tough to see. It was so sad to see this mass exodus and then him sitting at the table all by himself. It took about all the self control I had not to lose it right there in the cafeteria. We've encouraged him to go outside but he doesn't want to. "There is nothing to do and I can't play football with everyone else." While I admire him for not just following along because that's what everyone else is doing, it's also really hard to see him left alone. We all want our kids to fit in and be part of things and it his current differences were so blatant in that moment.

Seeing the situation first hand, I can understand why sitting there by himself those last 15 minutes of lunch has been contributing to some of his anxiety. He'll develop a stomach ache and headache, real or imagined I'm not always 100% sure. I then start getting texts from him. I've found if I can distract him by chatting about something else it helps. I've asked if there is someone else he could go sit with but he says no. (One of the effects of his stroke is lack of initiation in social situations which doesn't help either, add to that, it wasn't really in his nature pre-stroke either.) As I mentioned, he doesn't want to go just sit outside either.

It's in these moments that the enormity of what he copes with every single day really hits home. He doesn't feel "normal," doesn't have as much interaction with his friends in or out of school, truly worries that something else bad is going to happen, and knows he has to work harder than everyone else but still can't quite keep up. While he's going though some changes in middle school, his are different from a lot of the other kids. He isn't ready to start being more independent or "typical pre-teen" and these things are making the gap between him and his peers greater. I honestly don't know how he keeps as good of attitude as he does, it truly amazes me.

I am hoping we have finally found a workable solution to the lunch issue that he can start next week. Instead of resting before lunch, he'll go to homeroom and we'll change his break time to the last half of lunch. That way, when everyone else gets up to go outside, he can leave the cafeteria to chill/rest before his next class. We'll see how it goes...

Aero and a Blog Update

We had a very sad start to the New Year with passing of Jake's guinea pig, Aero. Todd found her Thursday morning when he went in to check on them. Aero was the first unexpected pet death Jake has had to deal with and he took it pretty hard. It was extra sad because Luke's guniea pig, Peanut, shared a cage with her and she seemed almost as sad and out of sorts as Jake. Jake was sad for himself and for Peanut and was pretty emotional most of New Year's Day. He kept telling us he feels like he is bad luck since he had an aneurysm and now this, especially since guinea's have a life expectancy of eight years and she was only three. We tried to explain to him that unfortunately pets sometimes die and we don't know why, but it wasn't because he is bad luck. (This picture is from when Todd brought her to the hospital for a visit since Jake was really missing her.) I'm glad he had a few days to deal with it before going back to school tomorrow. He was doing a lot better today.

With the start of the new year, I've been giving a lot of thought to things I'd like to improve in my life as well as acknowledging some of things I'm doing well. Part of that has included thinking about this blog. It started off as the most efficient way I could keep people updated with Jake's progress when things were literally changing day by day. I've never been much of a writer, but trying to share Jake's story complete with all the emotions and feelings that come with successes and challenges has ended up being very therapeutic for me. I'm also very grateful to have this record of his recovery as it has happened, because if it weren't for the interest from family/friends/friends of friends, I would never have kept these good of notes for myself. I've referred back to posts from those early weeks in the hospital several times trying to remember something that happened.

As we are more in a "regular life" routine, there often isn't too much to share and I find myself trying to come up with things to write about because it's Sunday night and time to post. I will continue to post updates on Sunday night, but it will be as noteworthy things happen and not necessarily every week. We are very grateful for the amount of interest in Jake and his progress....I never expected to still be blogging a year and a half down the road. I find myself overwhelmed at times when I look at the number of people who have read a post or comments from someone when they thank me for sharing our journey and keeping them updated on Jake.

Thank you for caring about Jake and continuing to read the blog.