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.