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.