We made some minor adjustments to Jake's schedule last week which really seemed to help. We are now taking him and picking him up instead of having him ride the bus. It really cuts down on the amount of walking he has to do at the beginning and end of the day. Add to that, his bus is always the last one to arrive after school to take the kids home, so that was another ten minutes of just standing there waiting after a long day. We are also having him rest during his homeroom time which oddly enough is three hours into his day. (I remember homeroom being first thing in the morning.) He sits in a comfortable chair, in a quiet area with his head phones and music for about 20 minutes. We noticed a big difference in his fatigue after just a couple of days with these two changes. We're hoping this will be enough while his stamina is improving.
I think some of Jake's "differences" (his words, not mine) are starting to bother him more at school. Tonight when we were doing his stretches before bed, he said to me that he hates how he is different from everyone else at school. When I asked him what he meant, he talked about having to wear a leg brace and having people "check in on him." I explained to him that his case worker also has 24 other kids she checks in on, he just doesn't notice, so no one else probably does either. As much as we talk about how everyone is different and have things they may not be happy with, it doesn't seem to help. And bottom line, he's right. He's dealing with more issues than most other kids his age and there isn't much we can say to change that.
That point was driven home again today. Jake had asked if we could go rock climbing since we hadn't been in weeks. It seemed like a good idea given we have a long weekend and an extra day of rest. Watching how quickly and easily Luke climbed up the wall and then how hard Jake had to work to go less than 1/2 the distance Luke had was hard. I stood there watching him vacillating between being so proud of him for wanting to even try and being so sad that so many things are such a struggle for him. I try really hard to spend most of my time and energy in the "I am so thankful for all the things he can do" mindset, but there are times that watching his struggle so hard with things that were so easy before, simply breaks my heart. They both had a great time climbing, each in his own way, which at the end of the day is all that is important.
Sunday, August 31, 2014
Sunday, August 24, 2014
First Week of Middle School
All in all, Jake did pretty well this week. From an emotional perspective, he handled things better than I expected. He doesn't know anyone in two of his classes and seems ok with it. I remember back in 4th grade when he found out his best friend wasn't in his class...he was so upset. He ended up making new friends, but it was a really rough start. This year, he is taking it in stride. He hasn't been upset or worried about it, and if he is, he isn't saying anything. He did tell me later in the week some kids asked why he has to wear the leg brace. He asked if they knew what an aneurysm was (they didn't) and then told them about his brain bleed, how it affected his left side and how he needs it to walk. Pretty proud of the way he handled it.
Physically, things aren't going as well for him. All the walking combined with the exertion of just being in school has really taken a toll. Jake's walking regressed as the week went on and his left arm has gotten really tight and is pulling up towards his chest. I talked to several friends this week who's kids were wiped out by the middle the week, and these are healthy 11 year old boys. New school, new teachers, lockers, different kids in their classes, taking notes, all the emphasis on organization....it's exhausting. Add to that a brain that is taking a lot of its resources healing, and it's a double whammy. We were hoping that having a pretty chill weekend would help, but two days just isn't enough time to recoup. We have been doing his stretches twice a day and have started massaging the muscles trying to keep them loose, but it's just not enough.
We are now struggling what to do moving forward. We realize it's just the first week, but we can't let him keep pushing himself to the point it may affect his long-term healing. School is going to get more rigorous as the weeks pass, which will only add to the overall fatigue. We don't want him undoing all the hard work he put in this summer with his walking. He also needs some balance in his life, it can't be all school, homework and rest. He wants to be able to do some things he wants like go to scouts and see his friends outside of school once in awhile. We are confident his stamina will improve, but it's a matter of figuring out to help that happen incrementally. I'm going to talk to his case manager tomorrow to see what we can figure out.
Speaking of scouts, we did have a bit of a celebration this evening. We attended the troop's Court of Honor tonight where Jake was presented with his new rank of Tenderfoot. He was so proud that he was able to earn this at the same time as many of his friends. Going to scouts every week this summer has been something he really looked forward to doing. Overall the troop has been great about adapting activities so he can participate. There are a few boys in particular who go out of their way when they are playing a game to make sure Jake has an advantage so he is on a more even playing field. I haven't been around too many teenage boys, but I've been pretty impressed with their thoughtfulness and consideration for Jake. Todd and I were really proud of him and the initiative he took to complete the requirements. It was a good way to end the weekend.
Physically, things aren't going as well for him. All the walking combined with the exertion of just being in school has really taken a toll. Jake's walking regressed as the week went on and his left arm has gotten really tight and is pulling up towards his chest. I talked to several friends this week who's kids were wiped out by the middle the week, and these are healthy 11 year old boys. New school, new teachers, lockers, different kids in their classes, taking notes, all the emphasis on organization....it's exhausting. Add to that a brain that is taking a lot of its resources healing, and it's a double whammy. We were hoping that having a pretty chill weekend would help, but two days just isn't enough time to recoup. We have been doing his stretches twice a day and have started massaging the muscles trying to keep them loose, but it's just not enough.
We are now struggling what to do moving forward. We realize it's just the first week, but we can't let him keep pushing himself to the point it may affect his long-term healing. School is going to get more rigorous as the weeks pass, which will only add to the overall fatigue. We don't want him undoing all the hard work he put in this summer with his walking. He also needs some balance in his life, it can't be all school, homework and rest. He wants to be able to do some things he wants like go to scouts and see his friends outside of school once in awhile. We are confident his stamina will improve, but it's a matter of figuring out to help that happen incrementally. I'm going to talk to his case manager tomorrow to see what we can figure out.
Monday, August 18, 2014
Day One of Middle School - Done!
He had a staff member meet him at the bus this morning to navigate the chaos but got to his core classes on his own and pretty close to on time. I don't think they even count tardies this week with all the kids figuring out where they are going. He was really happy he got his locker open on the second try this morning. He did have some trouble with it at lunch but got help from one of the staff floating the halls anticipating locker issues.
He was pretty tired tonight which we expected, but still in good spirits. We still have a few kinks to work out with supplies and logistics, but all in all I'd have to mark today up as a success. I am really happy to have the first day past us and am looking forward to a much needed night of sleep. :-)
Sunday, August 17, 2014
Night Before Middle School
On the night before Jake's first day of middle school, I am having a lot of different emotions. I am so excited for him to start this next phase of his schooling and increased independence. It's wonderful to see him so excited and eager to begin this journey. I'm also scared to let him go. I have all the normal worries many parents do sending their child to middle school. Will he make friends? Will he have problems with his locker? How will he handle going from one teacher to six? Will he stay organized?
Add to those, I have extra set of "stroke-related" concerns. Does he have the stamina to keep up with all the walking? How will he handle walking with so many kids in the hallways? Will he be able to find his way to his classes? Will his teachers recognize when he needs some extra help with something in class? Will he learn to ask for help when he needs it? How is the extra physical and mental fatigue going to affect his walking (actually his whole body)?
I know we've done everything we can to put the tools in place to help this transition. I really am trying not too worry to much, but it's just hard. I'm not going to be there and I don't have "my people" yet at the school looking out for him like I did at his elementary school. He so desperately wants to be like everyone else and even asked me last night "Mom, when am I going to walk better and be normal again?" Breaks my heart that I don't have the answers for him. The truth is, his walking may never be 100% like it was before and it could still take a long time to improve.
Part of what added to my worry was seeing how tired he was after he spent a 1/2 day at the school on Friday. He came home pretty wiped out, they were only there for four hours and didn't really do anything academic. Generally when he gets this fatigued, it takes a couple of days of rest to get his walking back on track. He's not going to have that opportunity being in school five days a week. I do realize that my worrying doesn't accomplish anything, but he's my kid and I hate to see him struggle. Especially when it's due to the affects of a stroke that just happened to him. I know he will get through this like he has so many other things with sheer will and determination. It may not be without some bumps and bruises or adjustments along the way. I also know it's going to take a lot of prayers and faith on my part.
Add to those, I have extra set of "stroke-related" concerns. Does he have the stamina to keep up with all the walking? How will he handle walking with so many kids in the hallways? Will he be able to find his way to his classes? Will his teachers recognize when he needs some extra help with something in class? Will he learn to ask for help when he needs it? How is the extra physical and mental fatigue going to affect his walking (actually his whole body)?
I know we've done everything we can to put the tools in place to help this transition. I really am trying not too worry to much, but it's just hard. I'm not going to be there and I don't have "my people" yet at the school looking out for him like I did at his elementary school. He so desperately wants to be like everyone else and even asked me last night "Mom, when am I going to walk better and be normal again?" Breaks my heart that I don't have the answers for him. The truth is, his walking may never be 100% like it was before and it could still take a long time to improve.
Part of what added to my worry was seeing how tired he was after he spent a 1/2 day at the school on Friday. He came home pretty wiped out, they were only there for four hours and didn't really do anything academic. Generally when he gets this fatigued, it takes a couple of days of rest to get his walking back on track. He's not going to have that opportunity being in school five days a week. I do realize that my worrying doesn't accomplish anything, but he's my kid and I hate to see him struggle. Especially when it's due to the affects of a stroke that just happened to him. I know he will get through this like he has so many other things with sheer will and determination. It may not be without some bumps and bruises or adjustments along the way. I also know it's going to take a lot of prayers and faith on my part.
Sunday, August 10, 2014
Looking back
It's hard to believe that in four days, it will have been a year since Jake came home from the hospital. The start of the school year was so different last year. Luke was having a really hard time getting ready for the first day of school. The normal excitement of picking out school supplies, getting new shoes, finding out who was in his class was overshadowed by the fact Jake was still in the hospital...Luke was doing it all by himself. It was so strange taking first day of school pictures with just one of the boys. Jake was also having a tough time knowing he was missing the first day with his brother and all of his friends.
The school psychologist had suggested we make a video for his classmates since many of them were expecting to see Jake back in the classroom on the first day of school. I watch that video now it takes me right back to those last few days in the hospital. He was still so fidgety and his voice was softer and more monotone. I don't think I ever shared that video on his blog, here is it. http://youtu.be/HJOS5KKtruU
He had been working so incredibly hard and wanted to come home and go to school so badly.
Contrast that to this year...Luke will once again be getting ready for the first day of school tomorrow by himself. But now it's because they have different start dates, Jake's middle school doesn't start until next Monday. I think they both have a little bit of apprehension about not being in the same school anymore. It was not uncommon last year for one of them to stop by the other's classroom to say hi. I'll be curious to see how this newest change affects both of them...
The school psychologist had suggested we make a video for his classmates since many of them were expecting to see Jake back in the classroom on the first day of school. I watch that video now it takes me right back to those last few days in the hospital. He was still so fidgety and his voice was softer and more monotone. I don't think I ever shared that video on his blog, here is it. http://youtu.be/HJOS5KKtruU
He had been working so incredibly hard and wanted to come home and go to school so badly.
Contrast that to this year...Luke will once again be getting ready for the first day of school tomorrow by himself. But now it's because they have different start dates, Jake's middle school doesn't start until next Monday. I think they both have a little bit of apprehension about not being in the same school anymore. It was not uncommon last year for one of them to stop by the other's classroom to say hi. I'll be curious to see how this newest change affects both of them...
Sunday, August 3, 2014
PT Results & Camping
We already knew Jake made huge progress during his intensive PT session, but got the official results that proved it on Monday. It's pretty amazing how much stronger his left leg got in just six weeks. One part of his workout each time was a leg press machine, here are his results:
On a completely different note, we went camping this weekend with 110 people from cub scouts. It's an annual family camping trip and something we look forward to every year. Jake was especially excited since we didn't get to go last summer. This year having become a Boy Scout, he was going as an advisor/teacher to the younger cub scouts. (For those of you who may not be familiar with scouts, cub scouts is for boy's grades 1-5 and boy scouts is for middle school and up.) We were a little hesitant not knowing how Jake would do navigating the uneven terrain, dealing with the higher altitude/cold nights, and getting less quality sleep. Despite that and a forecast showing 60-90% chance of rain all weekend, we decided to go anyway and figured worse case we could come home early if necessary.
Jake got around surprisingly well. Every time I turned around he was headed off somewhere with one of his friends. It was a strange mix of emotions. Being proud as I watched his growing independence and confidence while at the same time worrying about him being ok and having the stamina to keep up. When we're not at home, I am so tuned in to constantly watching him, it felt strange to just let him go. He truly amazed both Todd and I. It was also great to see him wanting to help at every opportunity he could. He wanted to carry stuff up from the car and setup the tent. When Luke's group started working on fire building, he helped set up the examples of how to get one started. I was assisting with the dutch oven desserts, and he came and asked if he could help out. Some of this was because he needed to do some specific camping tasks to earn his next rank in Boy Scouts, but a big part of it was he simply wanted to be part of things.
At the end of the weekend, we are so glad we had gone. Both the boys had a great time, Luke even commented as we were going to bed on Friday night that he had missed camping.We didn't end up getting much sleep (especially Todd and I), came home exhausted, but had a great weekend. It was so nice to spend time in the mountains hanging out with friends doing things we used to do. We also got very lucky and had no rain. :-)
June 16th
Both legs - pressed 25 lbs, 50 reps
Left leg only - 8 lbs, 45 reps
Left side (worked his hip) - body weight, 15 reps
July 28th
Both legs - pressed 62 lbs, 60 reps
Left leg only - 25 lbs, 60 reps
Left side (worked his hip) - 15 lb, 30 reps
I look at the numbers and am pretty amazed. Especially when I compare them to workouts I've done, I never do 60 reps of anything! He showed improvement in several of his timed tests as well. He didn't shave off as much time as he could have (he still wasn't back to 100% after last weekend when he got so wiped out) but he did better nonetheless. We are really, really proud of his hard work. He is now on break from PT until the end of October when he'll have another one-week intensive session.
Jake got around surprisingly well. Every time I turned around he was headed off somewhere with one of his friends. It was a strange mix of emotions. Being proud as I watched his growing independence and confidence while at the same time worrying about him being ok and having the stamina to keep up. When we're not at home, I am so tuned in to constantly watching him, it felt strange to just let him go. He truly amazed both Todd and I. It was also great to see him wanting to help at every opportunity he could. He wanted to carry stuff up from the car and setup the tent. When Luke's group started working on fire building, he helped set up the examples of how to get one started. I was assisting with the dutch oven desserts, and he came and asked if he could help out. Some of this was because he needed to do some specific camping tasks to earn his next rank in Boy Scouts, but a big part of it was he simply wanted to be part of things.At the end of the weekend, we are so glad we had gone. Both the boys had a great time, Luke even commented as we were going to bed on Friday night that he had missed camping.We didn't end up getting much sleep (especially Todd and I), came home exhausted, but had a great weekend. It was so nice to spend time in the mountains hanging out with friends doing things we used to do. We also got very lucky and had no rain. :-)
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