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!