Thankful

As I sat down tonight to write the blog, I was feeling overwhelmed with gratitude and thankful for so many things, some big, some small. First and most important, I am thankful for my family and that we are all still together as a family of four.

I am also thankful...

...for a very hands on husband who is truly my partner and not just my spouse (and the fact he helped me clean up the disaster I made of the kitchen today). 

...for my parents who have always been there for my brothers and I no matter what we needed.

...for all of our extended family who are patient and supportive, especially on days when things don't go as planned or I am having a really bad day and get a bit cranky.

...for the sound of laughter that has been heard in our house all day long as the boys played together. I can't remember hearing this much laughter in one day in a really long time. It simply fills the heart.

...for friends that seem to know when to check in.

...for the therapists and various caregivers who have come into our life, they genuinely care about Jake and have gone above and beyond doing things to help him recover.

...that our boys talk to us and share their thoughts, feelings, frustrations and concerns.

...that my Christmas cards and shopping are almost done.

...that I got to spend the afternoon in the kitchen baking bread and healthy treats for my family.

...that I get to look out my office window and see everyone's Christmas lights.

...that each week my calendar remains full with taking Jake to his various appointments since it means that therapy is working and he is continuing to make progress in his recovery.

...for a job that allows me to work from home and a boss that is extremely flexible with my schedule. 

...for the love felt in our household on a daily basis. Whether it's a hug or a "Mom, this is really good!" at dinner. 

 ...for the staff at both the boy's schools.

...that Luke seems to be handling all these changes to our family much better. 

...that Jake has adjusted better than expected to middle school. 

...that Jake has good friends that have stuck with him through the past year +.

 ...that the "good times" jar we started last January is stuffed full of slips of paper noting the good times we've had this past year.

....that all of our family lives fairly close. The holiday shuffle can be tough at times but I'm thankful we have families that value spending time together. 

...for all of you who care so much about Jake and his journey that you are still reading his updates a year and a half later.

I could go on and on but suffice it to say, I feel very blessed and fortunate to be living the life I'm living.

Drum Lessons

I realized my last couple of blogs were more focused on the "realities of life" and I neglected to mention a big milestone for Jake. He started drum lessons again a few weeks ago! It's something he's been wanting to do ever since he had his aneurysm. For a long time, he wasn't ready because his left hand and arm weren't recovered enough. He simply couldn't hold the drum stick for very long without his wrist dropping and didn't have muscle control for the up and down movement that comes from the elbow. Over the summer, his OT made him a wrist brace that gave his the wrist support and had a little pocket to hold his drumstick. He's been using it in band at school and it gives him the support he needs so his hand doesn't get as fatigued just holding the stick.  

Once school started, he didn't have the stamina to add an after school activity. To be honest, his stamina may not be quite there yet (he had to skip his second lesson last week because he was too tired), but we decided he needed it for his emotional well being. As I've talked about many times before, drumming is really important to Jake and I thinking getting to take lessons is a sign to him that he is really healing. Todd called and talked to his old instructor and he was excited to have Jake back, they had a really good connection before and we thought it would be good to have an instructor that he already knew. We were so pleased he was up to the challenge of teaching Jake in a slightly different way. 

I was so excited for them to get home from his first lesson and hear how things went. I was a little worried Jake would be frustrated since his skill level wasn't where it was when he had to stop taking lessons, but he came in the door grinning ear to ear. All they did was work on one drum (not the whole drum set) and focused a lot of having the left side copy what the right side was doing to keep an even beat. The thing we've noticed is Jake tends to use more of his whole body when he is hitting the drum with his left hand, you can see that in the video. At his lesson this past Monday, they were finding the longer he practices, the more relaxed his left arm gets and he's able to get closer to the basic up and down from the elbow. I think it will be awhile before he has the wrist movement he needs, but these are the first steps.  http://youtu.be/mpAOy9VWTi4

By far, the best thing to come from this is how it's affecting him emotionally. He's excited to go to lessons, practices without being reminded and it's something he really enjoys. 

CT Scan

We had a little bit of excitement that I could have done without this week. When I picked Jake up from school on Tuesday, I could tell something was off. He looked really tired and when I pressed him to find out what was going on, he told me he had been having shooting pain off and on at his right temple and on top of his right eye. It had started about 30 minutes before I picked up from school. As crazy as it is, he hasn't had a headache of any kind since his aneurysm burst so it caused some increased concern for all of us.

By the time we got home, he started crying and asked me if he was having another stroke. I could tell looking at his face that he was really scared. I got out the stroke warning signs card we keep on the fridge and went through it to show him he didn't have any of the signs that it was a stroke. I was trying to stay outwardly calm and not show my concern to him, but with everything that's happened, it's hard not to worry or wonder if something is going on inside his head. I called Todd and we decided it was worth making a phone call to his neurologist. Jake had also been really tired for a few days and had been blinking more than normal. With all the symptoms combined they suggested we bring him down to Children's for a CT scan just as a precaution.

We were very relieved the scan came back clear, there was nothing to be concerned about. I think it did all of us good to know for certain that he was ok, especially Jake. He now knows that a headache can just be a headache.

It's  another tough thing to see him go through. He bumped the right side of his head on the bathroom cabinet tonight and got worried again that he had hurt himself. We told him that he was no more at risk injuring himself from a bump on the head than anyone else. (Something we confirmed last August before we ever left the hospital.) His worrying about various ailments more than he used to is a symptom of his stroke and it's something we work with him on to keep in check. He said that he hates worrying that something is happening in his brain every time he gets a headache or bumps his head. We talked to him about the fact it's perfectly normal to get worried and as time goes on and more things happen that cause no reaction, he'll start to worry less. I hate seeing that kind of stress and worry on his face.

Color Run

I had another one of those amazing and heartbreaking all at the same time moments on Friday at Jake's school. It was their big Color Run fundraiser and all the 6th graders who raised money were out on the track to participate. (The Color Run involved kids getting powdered color thrown on them as they go around the track and end up "colored" by the end.) The more money they raised, the more swag they got... Jake was fully decked out, white wig and everything!

He was so excited to be participating in the run/walk with everyone else. Being able to do what other kids are doing has become really important to him since his aneurysm burst, he just wants to be "normal." Unfortunately, at times it's a double edged sword. While he was there and participating, he wasn't like everyone else. Physically, he simply can't keep up. That's what happened on Friday...

All the kids were out on the field and the coordinators were getting the kids excited and hyped up to start the run. They did a count down, all the kids threw their color packets up in the air and took off running. Situations like that tend to make me a little nervous due to his balance and the possibility of getting bumped or knocked down. I was looking for him as the kids took off and when I found him I stood there stunned. He was running. Actually running. We'd seen him fast walk before, but this was a slow jog. As I watched him my emotions hit me in rapid fire succession. Shock (I had no idea he could run like

that), joy (how awesome, he's running!), fear (is he pushing himself too hard?), and finally heartbreak. He was running as hard his legs could handle and within seconds, he was completely by himself on the track. The pack of kids kept going and he literally could not keep up, he was alone trailing his friends and all the other kids. Seeing that completely broke my heart and with all the emotions hitting me, the tears started. He finally slowed down and walked some, then would run a little more. Within a few minutes, he was getting lapped and the kids were more evenly spread out so it wasn't as visibly obvious he couldn't keep up. It is so hard to watch your child pushing himself further than he probably should be and it just isn't enough. What makes it doubly hard, it a year and a half ago, he could have kept up just fine.

By the time he got 3/4 of the way around the track to where I was standing, I walked up to see how he was doing. He was beet red, thirsty, and sweating. I told him he was doing great, but it was time to switch to his wheelchair. I didn't get any argument. Luke had come with me to watch the race and offered to push Jake which seemed like a better choice than mom doing it. When they came by again, a new friend of Jake's came up and asked if he could take him around. I think Luke was glad because he really wanted to help throw color at the kids. :-) After a few laps Nathan was also wiped out and I asked Jake if he was done. He wasn't so I took him around a few more times. Luke was pretty excited at the prospect of getting both Jake and I with his color when we came around.

When the race was over, they had a "leaf blower brigade" which blew the color off the kids before they went back into the school. I had roped my dad into helping so Jake got all his color blown off by Grandpa. I was so glad he and my mom came to watch and got some pictures. I wouldn't have had hardly any if they hadn't been there. I did get some video of Jake's running towards the end of his first lap (that's Jake in the orange wig) http://youtu.be/vuNZzXe-ij0

I think Jake is glad he took part in the run, but was very aware that he was slower than everyone and not enjoying it with his friends. He got a little sad Friday night talking about it and that's when I wish I had the power to make this all go away. But I don't and sadly, it's just one more thing he has to deal with.

Fall Break

While it was certainly not a relaxing fall break, it was a productive one. Jake had 10 appointments this week, five of them for a one week intensive PT session. He hasn't had any PT since summer and we wanted to try and capitalize on the botox he got a few weeks ago for his foot. It's been pretty amazing progress, he is walking better than we have seen since his aneurysm burst. The botox is allowing him to get his left foot flat (instead of leaning towards the outside edge) and his physical therapist has taped his left leg to help keep it straight. He's had a tendency for his leg to bow out and she is worried he is going to start having knee pain. Whatever it is, it seems to be working and it's exciting to see such great progress. His younger cousins even commented today how nicely Jake was walking.

On Jake's own initiative, he has also been walking more at home this week without his leg brace. It's slow going, but I think being able to get his foot flat combined with the increased ankle movement he is getting is giving him the confidence to try it more. It's pretty cool to see him be able to actually lift his ankle as he takes a step, plant his heel and walk without holding onto something. It's not the "hop/walk" we are used to seeing when he had his brace off.

We did manage to fit in a few fun activities as well. Jake went to a Halloween party on Monday with boy scouts, we squeezed in a movie mid-week, went trick-or-treating, played laser tag and got together with my family today for my both my brother's birthday. Trick-or-treating was pretty incredible (Luke was a sensei and Jake was Slash from the band Guns n Roses). Last year, there was no way Jake could have walked to more than a few houses so we took him around the neighborhood in his wheelchair. Many times Todd took Jake, along with his chair, up several steps to people's houses. This year, Jake and his friend Connor walked the entire way and were out for about an hour and a half. We kept asking if he was tired or wanted his chair and he kept saying no. They went at a pretty leisurely pace and took a couple of breaks, but he just kept going. I was not only impressed with his drive and stamina, (especially after the long week he had) but also with Connor who patiently went at Jake's pace. Luke and his friend weren't quite as willing to go slower and were often a couple houses ahead. :-)

Jake said today that he isn't ready to go back to school tomorrow, and doesn't feel like he got a "break," but we're hoping all his hard work this week will help his walking continue to improve.