I am really enjoying having the boys home during break. Yes, the house is a bit messier and things are a bit louder and more chaotic, but this is the first break in a long time where Jake hasn't had a ton of appointments. We did a five day PT session over fall break (in addition to all of his normal appointments) and last summer was simply nuts with everything we crammed in. He's only had a couple things scheduled this week and it's given us time for movies, driving around to see the lights, lots of board games and good quality family time. It has been great to see Jake having fun and laughing. We really haven't done anything all that extraordinary, but his favorite thing is to play games as a family and we've done a lot of that. We are lucky that both sides of our family live pretty close, so we've been able to spend time with everyone over Christmas.
Jake's anxiety seems to be a little bit better too. He still mentions various aches and pains, but it's less often and he is getting to sleep a little bit faster. With as much as things have been worrying him, we decided it was finally time to take him to a psychologist. We were really pleased to find out that the one he saw in the hospital is now seeing kids on an out-patient basis as well. When we saw her last week she was amazed at how well he is doing and that he did such a good job articulating what has been going on. She also mentioned it's very common for anxiety to kick in about a year and a half out and especially because of his age. We don't think he is going to have to see her for very long, but I'm just glad he remembered her and was comfortable enough to open up. With all he has been through, it's probably long overdo getting him some emotional/mental help too.
Wishing everyone a Very Happy New Year and wonderful 2015! We are very excited to see what it brings for our family.
Sunday, December 28, 2014
Sunday, December 21, 2014
My Experiences With A Brain Aneurysm by Jake Morgan
Todd and I have spent a lot of time over the past year and a half wondering what's really going on inside Jake's head. We have talked to him about things of course but still didn't really know how this whole experience has affected him
and how he feels about it. That all changed this week with a school assignment of all things.
In Science over the past month the students had to do research on a disease, the final piece was a project that could help someone who has the disease. Jake chose to study aneurysms. For his project he decided to do sort of a public service announcement/advice about what it's like to recover from a burst aneurysm. It was the first time I felt like I was truly able to get inside his head and see what he was thinking. It hit me pretty hard emotionally, I didn't expect to read some of what I did. I asked Jake if I could share some of his paper and he said yes. Here are a few excerpts:
All of this makes me so much prouder of him, his strength and determination. I really don't think it would be possible to love him anymore.
In Science over the past month the students had to do research on a disease, the final piece was a project that could help someone who has the disease. Jake chose to study aneurysms. For his project he decided to do sort of a public service announcement/advice about what it's like to recover from a burst aneurysm. It was the first time I felt like I was truly able to get inside his head and see what he was thinking. It hit me pretty hard emotionally, I didn't expect to read some of what I did. I asked Jake if I could share some of his paper and he said yes. Here are a few excerpts:
Try not to worry about things, but it’s hard not to. Just don’t think about it. Everything is hard. Everything. Some of the advice I can give is to not be scared. I was. Some things will be hard, like trying to be normal and do normal things.
I was scared, worried, and all I wanted to do was go home.
It’ll be extremely hard to move your hands, fingers, legs, and feet again, but, if you do therapy, that will help. I know how all of my therapies have helped me with just about everything I do.
I know that there are advantages of having an aneurysm, like getting to know a lot of new and nice people. There are definitely more disadvantages, like not being able to be “normal” like other kids. Try not to think negatively of yourself, think of the bright side, but that might be really hard to do.
The people that might come into your life are occupational therapists, physical therapists, acupuncturists, psychologists, and doctors. Life will be very hard for about a year. After that year, you will have learned how life will be for awhile.
Don’t try to “fit in” with your friends, I mean you should try to be normal, but don’t do everything that your friends do. If all of your friends go out to play football, for example, you should stay in and do what you want.
I know that everything will be hard for anyone who has had a brain aneurysm burst, but just don’t think about that stuff, I did, it doesn't help at all.
Try to do as much as you can to heal, like O.T., P.T., acupuncture, and neurofeedback. These are just some examples of therapies I have to do. Some advice I can give you is to just give it your everything. Use tools that your therapists give you. No matter how much you hate therapy just do it. I know it will help you down the road. I was always told “The road to go home is through therapy”. That was true. I stuck with therapy and I went home. (Side note: that quote was from my dad and on a poster he made Jake in the hospital to help count down the days until he got to come home.)
Don’t think about all of the things that you can’t do, think of the things you can. Never give up on your dreams. Always keep going.
I think focusing on things I liked helped me heal. Family-related things would also make me feel a lot better. My family also helped me feel better about myself, they told me how much I’d improved from the beginning to the end.I can't begin to describe how reading some of these words hit me. I hated seeing in print that he was so scared and worried. I think I knew it all along, but to have it verified was tough. I also had no idea he realized how important and impactful all his therapy has been. He has this amazing positive attitude with a bit of realism thrown in.
All of this makes me so much prouder of him, his strength and determination. I really don't think it would be possible to love him anymore.
Sunday, December 14, 2014
Band Concert
It's been another crazy week in the Morgan household. No matter how hard I try to not let things get so hectic this time of the year, I end up failing. I guess it's just par for the course when life is already busy and you throw a huge holiday and all that goes with it into the mix. :-)
Jake had his first band concert on Wednesday. He had quite a bit of nerves stemming from wanting to do well and had been a little stressed about it the past week or so. It was so cool to see him and a few of his percussion friends from elementary school up there part of the band. He did such a great job and more importantly, looked like he was really enjoying himself. From what we could see (he was way in the back being a drummer) he was smiling the whole time.
We were really hoping that once the concert was over, some of the recent anxiety might let up and he might start sleeping better. No such luck. He is still struggling with anxiety and worry over getting sick or now the latest....going blind. Anytime anything gets remotely close to his eye or if he accidentally brushes his eye when his hands aren't freshly washed, he gets worried it's going to affect his vision. Logically, I get why he is so worried about these two specific issues. As I mentioned last week, he equates being sick to having a really hard time walking. And having already lost 1/2 the vision in both eyes due to where his bleed was, he doesn't want to do anything that might cause him to lose more of his vision. The other part of me doesn't know how to reassure him that a speck of dust or the brush of a hand can't hurt his vision. I did tell him the other day that at some point, he's going to catch a cold. It just can't be avoided. He is doing a great job at keeping his hands washed, eating well and taking vitamins, but as we all know, colds can't be avoided 100% of the time. I also told him that his walking may or may not be affected, we just don't know. He's healed more and walking better than he was the last time he got sick, so it might not be as bad this time. I just want to see him worry less and be a little more carefree, not an easy task.
We were really hoping that once the concert was over, some of the recent anxiety might let up and he might start sleeping better. No such luck. He is still struggling with anxiety and worry over getting sick or now the latest....going blind. Anytime anything gets remotely close to his eye or if he accidentally brushes his eye when his hands aren't freshly washed, he gets worried it's going to affect his vision. Logically, I get why he is so worried about these two specific issues. As I mentioned last week, he equates being sick to having a really hard time walking. And having already lost 1/2 the vision in both eyes due to where his bleed was, he doesn't want to do anything that might cause him to lose more of his vision. The other part of me doesn't know how to reassure him that a speck of dust or the brush of a hand can't hurt his vision. I did tell him the other day that at some point, he's going to catch a cold. It just can't be avoided. He is doing a great job at keeping his hands washed, eating well and taking vitamins, but as we all know, colds can't be avoided 100% of the time. I also told him that his walking may or may not be affected, we just don't know. He's healed more and walking better than he was the last time he got sick, so it might not be as bad this time. I just want to see him worry less and be a little more carefree, not an easy task.
Sunday, December 7, 2014
Jake's 12th Birthday
Jake celebrated his 12th birthday this week! He had a few friends over on Friday night for a sleepover and it was interesting comparing this year's celebration with last year's. He has really come so far in the past 12 months.
Last year was really tough on Todd and I seeing what a hard time Jake had trying to keep up with his friends...physically, socially and his stamina in general. While he's still not 100%, this year was so much better. He was part of the conversation, kept up when they were goofing around and stayed up much later than we thought he could. In fact, after midnight, we had to finally tell them it was time to wind it down. It took the rest of the weekend to recoup, but that's not all that abnormal after a sleepover, even for Luke. Todd and I were talking Saturday morning about how the differences between Jake and his friends have lessened over the past year...he really has made a lot of progress. We're also really pleased that he's got good friends that have stuck with him.
On a completely different note, one of the things we've noticed with Jake is he tends to go through phases/cycles. Right now he seems more anxious about things. Looking back, it started around the time he had his CT scan a few weeks ago. He has become acutely aware of every ache and pain and is focusing on those feelings to the point he's constantly worried that "something else bad is going to happen." It's so hard to see him genuinely worried that his eyes being irritated might mean he's going blind or a stomach ache means he is going to get sick and it will affect his walking. (He got a cold a couple times last winter and his walking really regressed while his body was fighting off the cold.) It's started affecting him being able to go to sleep at night because he lays there thinking about and focusing on every thing that feels slightly off in his body.
Todd and I are constantly telling him that the stomach aches, head aches, etc. are normal and it doesn't mean anything is "wrong." I've also told him that when I stop and think about and focus on what's going on in my body, my back is a little sore, my stomach a little irritated and my eyes are dry. We are encouraging him not to focus too much on the little aches and pains and reassure him that he really is ok. It's hard knowing how much of this is due to what happened to him and how much could be very normal for a 12 year old. We're just hoping it doesn't last too long and will continue to reassure him the best we can.
Last year was really tough on Todd and I seeing what a hard time Jake had trying to keep up with his friends...physically, socially and his stamina in general. While he's still not 100%, this year was so much better. He was part of the conversation, kept up when they were goofing around and stayed up much later than we thought he could. In fact, after midnight, we had to finally tell them it was time to wind it down. It took the rest of the weekend to recoup, but that's not all that abnormal after a sleepover, even for Luke. Todd and I were talking Saturday morning about how the differences between Jake and his friends have lessened over the past year...he really has made a lot of progress. We're also really pleased that he's got good friends that have stuck with him.
On a completely different note, one of the things we've noticed with Jake is he tends to go through phases/cycles. Right now he seems more anxious about things. Looking back, it started around the time he had his CT scan a few weeks ago. He has become acutely aware of every ache and pain and is focusing on those feelings to the point he's constantly worried that "something else bad is going to happen." It's so hard to see him genuinely worried that his eyes being irritated might mean he's going blind or a stomach ache means he is going to get sick and it will affect his walking. (He got a cold a couple times last winter and his walking really regressed while his body was fighting off the cold.) It's started affecting him being able to go to sleep at night because he lays there thinking about and focusing on every thing that feels slightly off in his body.
Todd and I are constantly telling him that the stomach aches, head aches, etc. are normal and it doesn't mean anything is "wrong." I've also told him that when I stop and think about and focus on what's going on in my body, my back is a little sore, my stomach a little irritated and my eyes are dry. We are encouraging him not to focus too much on the little aches and pains and reassure him that he really is ok. It's hard knowing how much of this is due to what happened to him and how much could be very normal for a 12 year old. We're just hoping it doesn't last too long and will continue to reassure him the best we can.
Sunday, November 30, 2014
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.
Sunday, November 23, 2014
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.
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.
Sunday, November 16, 2014
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.
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.
Sunday, November 9, 2014
Color Run
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
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.
Sunday, November 2, 2014
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.
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.
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.
Sunday, October 26, 2014
Jake 2.0
I had a chat over the weekend with another mom from a group I belong to for parents of children with brain injuries. She was having a really tough time the past few days mourning the loss of her daughter...the daughter she had before her traumatic brain injury. Her daughter survived a horrible car crash, but the child that survived is not the same child she was before.
It's not something that most people who haven't experienced it really think about, but it's very real. People on the outside looking in see how blessed we are that Jake survived...and trust me, we feel extremely lucky he is still with us and are thankful every day. They see how far he has come and that he is still progressing, again all very true. But, along with all the physical struggles that are visible to everyone, there are parts of Jake's personality that are gone and others that are just different. We are luckier than a lot of people I talk to who's children now exhibit horrible aggression or insane mood swings. Most of Jake is still "there," but for those of us closest to him, we see the differences. My mom has mentioned to me, usually in tears, that she misses how easily she and Jake used to carry on a conversation. His answers tend to be shorter and he doesn't often initiate sharing things like he did before. I also really miss Jake's wit, at times some of the things that would come of out his mouth would floor me. I'm sure some his close friends notice the nuances in his personality too. He can tend to fixate on things or be repetitive and he doesn't always get sarcasm. Todd and I have a hard time processing the entire situation at times, I can't imagine how an 11 year old friend handles it.
We have seen improvements over the past year in many of these areas, but we've accepted that he is now Jake 2.0 and won't ever be the same as he was before. Part of it is because of the experience itself and what he's had to overcome, and the other part is simply due to damage to the brain that can't be fully repaired. There is nothing "wrong" with Jake or his personality, it's just different.
When your child survives a life threatening brain injury, you aren't given the time to mourn the loss of the child that was. All of your energy goes into their recovery. We choose to spend the majority of our time in "we are very blessed" instead of mourning the loss, but it creeps up every now and then and it usually followed by a fair amount of tears.
He is still a very sweet and loving child that I wouldn't trade for anything, but I'd by lying if I said I didn't at times miss the "before all this happened" Jake too.
It's not something that most people who haven't experienced it really think about, but it's very real. People on the outside looking in see how blessed we are that Jake survived...and trust me, we feel extremely lucky he is still with us and are thankful every day. They see how far he has come and that he is still progressing, again all very true. But, along with all the physical struggles that are visible to everyone, there are parts of Jake's personality that are gone and others that are just different. We are luckier than a lot of people I talk to who's children now exhibit horrible aggression or insane mood swings. Most of Jake is still "there," but for those of us closest to him, we see the differences. My mom has mentioned to me, usually in tears, that she misses how easily she and Jake used to carry on a conversation. His answers tend to be shorter and he doesn't often initiate sharing things like he did before. I also really miss Jake's wit, at times some of the things that would come of out his mouth would floor me. I'm sure some his close friends notice the nuances in his personality too. He can tend to fixate on things or be repetitive and he doesn't always get sarcasm. Todd and I have a hard time processing the entire situation at times, I can't imagine how an 11 year old friend handles it.
We have seen improvements over the past year in many of these areas, but we've accepted that he is now Jake 2.0 and won't ever be the same as he was before. Part of it is because of the experience itself and what he's had to overcome, and the other part is simply due to damage to the brain that can't be fully repaired. There is nothing "wrong" with Jake or his personality, it's just different.
When your child survives a life threatening brain injury, you aren't given the time to mourn the loss of the child that was. All of your energy goes into their recovery. We choose to spend the majority of our time in "we are very blessed" instead of mourning the loss, but it creeps up every now and then and it usually followed by a fair amount of tears.
He is still a very sweet and loving child that I wouldn't trade for anything, but I'd by lying if I said I didn't at times miss the "before all this happened" Jake too.
Sunday, October 19, 2014
More Botox
Jake got another round of botox on Tuesday, this time for his foot. His last treatment was back in January and all of his hard work in therapy combined with acupuncture has kept him from having to get it again until now. He has been getting some really good movement back in his left ankle, but he still has so much muscle tightness pulling his foot inward, it's been slowing his progress and he needed the botox to help relax those muscles. We're doing it now so he can make the most of his five days of intensive PT he'll be doing over fall break at the end of the month.
Initially he was pretty bummed he had to get it again and felt like there was something he did (didn't do) that caused it. I explained to him that it was just the way his body was recovering and the fact that he still didn't need it in his arm or his hamstring was really good progress. He's been walking a little more at home without his brace and I think he is noticing an improvement. I'm anxious to see how he's doing after the PT sessions in a few weeks.
Initially he was pretty bummed he had to get it again and felt like there was something he did (didn't do) that caused it. I explained to him that it was just the way his body was recovering and the fact that he still didn't need it in his arm or his hamstring was really good progress. He's been walking a little more at home without his brace and I think he is noticing an improvement. I'm anxious to see how he's doing after the PT sessions in a few weeks.
Sunday, October 12, 2014
Jump Street
We took Luke and a few friends to Jump Street yesterday for his belated party with his friends. For those of you who don't know about it, it's an indoor trampoline park with wall to wall trampolines. I was a little worried how Jake would do and didn't know if they would let him jump with his leg brace but didn't want to exclude him from going. The boys have always been part of each others birthday parties. They told us when we got there that they were fine with it if we were.
In retrospect, he has been jumping on our trampoline all summer, so I don't know what I was worried about. As soon as we got there, they all took off jumping on the long runway type trampolines and Jake did fine. Next thing I know, they are playing dodgeball which to be honest, made me a little nervous. Jumping is one thing, but avoiding being hit by a ball (or other kids) while jumping and then throwing a ball back at the other team is a different story. As usual, I should have given him more credit, he did great. Todd was also playing with the boys off and on, but really let Jake do his own thing and didn't hover like I probably would have. I kept trying to get Jake to come out and rest, but would get a head shake saying "no." It was actually pretty cool to watch him hold his own and see how much fun he was having. He even did a pretty good job avoiding being hit with the ball with the exception of one early on to the face. Luckily the balls were pretty soft. :-)
He was super exhausted when we got home and ended up sleeping twelve hours last night. All in all a good day.
In retrospect, he has been jumping on our trampoline all summer, so I don't know what I was worried about. As soon as we got there, they all took off jumping on the long runway type trampolines and Jake did fine. Next thing I know, they are playing dodgeball which to be honest, made me a little nervous. Jumping is one thing, but avoiding being hit by a ball (or other kids) while jumping and then throwing a ball back at the other team is a different story. As usual, I should have given him more credit, he did great. Todd was also playing with the boys off and on, but really let Jake do his own thing and didn't hover like I probably would have. I kept trying to get Jake to come out and rest, but would get a head shake saying "no." It was actually pretty cool to watch him hold his own and see how much fun he was having. He even did a pretty good job avoiding being hit with the ball with the exception of one early on to the face. Luckily the balls were pretty soft. :-)
He was super exhausted when we got home and ended up sleeping twelve hours last night. All in all a good day.
Sunday, October 5, 2014
Luke's Birthday
We had the joy of celebrating Luke's 10th birthday today. It's hard to believe that both our boys are now in double digits, time is going by way too fast! I really love seeing the bond those two share. While their relationship has changed, in some ways they are closer than they were before. When Jake first got home from the hospital, their roles shifted. Due to everything going on with Jake, Luke stepped into the role of big brother, it's just the way things were. He wasn't always happy about it, but he dealt with it the best he could. I've been seeing a shift happening again. Luke is starting to treat Jake like he did before - being competitive, "messing" with him, and truly wanting to hang out with his brother.
Today was a perfect example. Todd had been offered two tickets to the Bronco game today, so he took Luke for his birthday and some good quality one-on-one time. Jake is often bummed when Luke isn't around and genuinely misses him which happened again today. Todd mentioned Luke seemed a little down at the game and when he finally got Luke to tell him what was wrong, he was missing Jake. The last time we went to a game, it was all four of us and I think he was wishing Jake could be there too. Don't get me wrong, they have their moments, but overall, they are both each others first choice of someone to hang out with.
Tonight after dinner, Jake asked if we could play charades. It was so fun to watch the two of them together. Whether laughing at my poor acting skills or acting things out together, they were both having such a good time. It made me want to freeze time, they are growing up much too fast.
Today was a perfect example. Todd had been offered two tickets to the Bronco game today, so he took Luke for his birthday and some good quality one-on-one time. Jake is often bummed when Luke isn't around and genuinely misses him which happened again today. Todd mentioned Luke seemed a little down at the game and when he finally got Luke to tell him what was wrong, he was missing Jake. The last time we went to a game, it was all four of us and I think he was wishing Jake could be there too. Don't get me wrong, they have their moments, but overall, they are both each others first choice of someone to hang out with.
Tonight after dinner, Jake asked if we could play charades. It was so fun to watch the two of them together. Whether laughing at my poor acting skills or acting things out together, they were both having such a good time. It made me want to freeze time, they are growing up much too fast.
Sunday, September 28, 2014
Trail Ride with Praying Hands Ranch
We were blessed with another gorgeous Colorado weekend for the Praying Hands Ranch trail ride yesterday. Praying Hands Ranch is where Jake has taken his hippotherapy (horse lessons) since last January and this was an outdoor ride for their annual fundraiser. They brought several horses from the Ranch so about 10 kids could participate in the ride.
Both Jake and Luke had so much fun getting to ride outside. It seemed like every time they had a lesson this summer, it was too hot or on the verge of raining so all their classes were in the arena. All the student riders had someone leading their horse along with two "side-walkers" to make sure they were safe. Todd and I walked with them on the trail and it was great to see how well Jake did. Riding on natural terrain vs. in a flat arena takes a lot more core strength and work. Add to that, we were on the trail for over an hour and it was in the mid-80's. He did such a good job staying evenly balanced. There were times during his lessons this summer where he tended to lean/slide more to the left as he'd get tired. It was very encouraging to see that the increased
strength he has gained the last few months enabled him to stay seated evenly
in his saddle the entire ride. 
We haven't been able to get back to horse therapy since school started simply because Jake is just too physically tired after a day at school. We're hoping that within the next few months it's something we can add back to his schedule. Seeing how much both boys enjoyed the outdoor ride made me realize how beneficial it really is for them. Physically for Jake and emotionally for both of them.
We were treated to a delicious BBQ at the end of the ride. Everyone was pretty wiped out, but it was a great day.
Sunday, September 21, 2014
Challenge Air
Jake was supposed to sit upfront as co-pilot but offered it to Luke since he sat upfront last time when they did the flight for scouts. Luke was pretty excited and even got to fly the plane. The airport was only about 20 minutes away and their flight took them in a big loop over Aurora Reservoir and our house which was pretty cool. They all had a really good time and were grinning ear to ear when they landed.
Lately I've been struggling with my mixed emotions and feelings over the many incredible opportunities Jake has been given simply because he had a stroke. While I fully acknowledge that his life has been full of many new challenges and limitations since his aneurysm burst, it feels odd accepting things because of it. Part of what makes it hard is I know there are so many kids who would love to go on the field of a Rockies game or take a flight in a small plane that never get the chance. While we are extremely grateful, it's a strange thing to come to terms with. I guess I just need to view it as a blessing he gets some special opportunities to help offset many of his day-to-day struggles.
Sunday, September 14, 2014
Rock Climbing - Eldorado Canyon
What an amazing Sunday! The weather couldn't have been nicer and we got to spend a good portion of the day at Eldorado Canyon in Boulder. It was absolutely beautiful! We got to take the boys rock climbing with six other kids though an outing arranged by Children's Hospital stroke clinic and the Boulder Climbing Gym.
While both the boys have done quite a bit of climbing inside on man-made rock walls, neither of them have had the opportunity to actually climb using harnesses and ropes on real rocks. It's a completely different experience. Instead of having strategically placed "rocks" like inside, they had to figure out how to get up a fairly slippery rock face using what nature created. I was so impressed with both of them. Luke often stops part way up the inside walls because he gets freaked out by how high he is. He didn't have that problem today at all. (That's him to the left.) He climbed route after route all the way to the top. It was so great to see the look of satisfaction on his face when he'd get to the top, I was so proud of him.
Then of course there is our determined Jake. When he first started out, he was really struggling and I was questioning if coming was such a good idea. He was having such a hard time finding places that felt stable enough to hold his feet as well as trusting if his left leg could support him. As he was taking his first few "steps," Todd was helping place his feet until he got the feel for it. Seeing how hard it was for him, I honestly expected him to go a short way up and come back down. I should have known better, he just kept going. Once again, I stood there watching him with tears literally running down my face. He was having to work so much harder than everyone else but he just didn't give up. I hate that things are so much more difficult for him, but at the same time, I am so incredibly proud of his sheer will and determination. I stood there and watched as he got all the way to the top of his first course. His smile as he looked down at us showed every bit of pride he felt having made it to the top.
He was wiped out after that, so spent about an hour resting. He decided he wanted to go once more before we left but "just a little way up". This time, he was putting significant weight on his left leg and was reaching with his left arm. It was very slow going, but it was so incredible to watch. He would get to the place he wanted and then would decide to go a little further. I took some video and am so happy I have this in addition to the pictures. Watching him just fills my heart and makes me so thankful that he is even able to do this. (Sorry about the background chatter, the lady behind me didn't realize I was filming.) http://youtu.be/0U28AkrF3Ms
Then of course there is our determined Jake. When he first started out, he was really struggling and I was questioning if coming was such a good idea. He was having such a hard time finding places that felt stable enough to hold his feet as well as trusting if his left leg could support him. As he was taking his first few "steps," Todd was helping place his feet until he got the feel for it. Seeing how hard it was for him, I honestly expected him to go a short way up and come back down. I should have known better, he just kept going. Once again, I stood there watching him with tears literally running down my face. He was having to work so much harder than everyone else but he just didn't give up. I hate that things are so much more difficult for him, but at the same time, I am so incredibly proud of his sheer will and determination. I stood there and watched as he got all the way to the top of his first course. His smile as he looked down at us showed every bit of pride he felt having made it to the top.He was wiped out after that, so spent about an hour resting. He decided he wanted to go once more before we left but "just a little way up". This time, he was putting significant weight on his left leg and was reaching with his left arm. It was very slow going, but it was so incredible to watch. He would get to the place he wanted and then would decide to go a little further. I took some video and am so happy I have this in addition to the pictures. Watching him just fills my heart and makes me so thankful that he is even able to do this. (Sorry about the background chatter, the lady behind me didn't realize I was filming.) http://youtu.be/0U28AkrF3Ms
Sunday, September 7, 2014
Uneventful Week
Jake has had a pretty uneventful week, which lately is a good thing! His stamina seems to be improving little by little with the slight adjustments we made to his school schedule a few weeks ago. He is really enjoying band now since they are actually getting to play music. It took a little while to get all the instruments assigned to the kids and he was getting pretty antsy to start drumming.
He still isn't doing much outside of school other than once a week stretch and acupuncture. We haven't been to scouts since school started and we postponed horse therapy which was due to start August 27th. For the first time since school started, he had a friend over a few hours today which was nice. It can be hard to keep his activities so limited, but we really don't have a choice. School is taking pretty much all his energy right now. He starts OT again this week, so we'll see how that goes.
Not much else to report, back to the Bronco game - go Broncos!
He still isn't doing much outside of school other than once a week stretch and acupuncture. We haven't been to scouts since school started and we postponed horse therapy which was due to start August 27th. For the first time since school started, he had a friend over a few hours today which was nice. It can be hard to keep his activities so limited, but we really don't have a choice. School is taking pretty much all his energy right now. He starts OT again this week, so we'll see how that goes.
Not much else to report, back to the Bronco game - go Broncos!
Sunday, August 31, 2014
Adjustments at School
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.
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 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. :-)
Sunday, July 27, 2014
PT is done....for now
Jake is done with his six week intensive PT! We are so proud of how hard he's worked all summer and have definitely seen an improvement in his strength and walking. I'm anxious to see the comparison between pre- and post-treatment testing tomorrow at his exit evaluation. The plan as of now is to take the next couple of months off from PT and have another intensive session during fall break.
The ironic thing about this is Saturday was the worst day he's had all summer. His walking wasn't very good, his arm was contracted up near his chest and even cognitively, he was just a little off. The good thing is, we know exactly why...he was exhausted. Friday, he had a really hard therapy session in the morning, then we went to acupuncture where they've been doing a movement based treatment. (Instead of lying down and relaxing, he is getting several needles in his head and he does a series of movements with the right side of his body that he had to imitate with left side.) He then went to a friend's house for a few hours and finally had a class Friday night for his aviation merit badge and didn't get home until about 10:00. Saturday, we had to be out of the house by 8:00 a.m. for the 2nd part of the aviation badge where he went on his flight. Add to that, we could have eaten a lot better on Friday which didn't help anything. Take-out pizza when his body was depleted probably wasn't the best choice.
It was so hard to see him struggle, he really hasn't had any type of regression since well before school got out. It was also a really good reminder for us that we need to keep his activity level in check, make sure he gets plenty of rest and that we're eating well...all three of those being out of balance took their toll. We spent the rest of the weekend keeping things pretty calm and getting everything else back on track. He was doing much better today which was so good to see.
In the midst of all this, the boys got to take their first flight in a small four-seater plane on Saturday. There is an organization called Young Eagles that offers free flights to kids, and Jake got the opportunity to go on Saturday. Taking the ground school class on Friday night and the flight on Saturday allowed him to complete his aviation merit badge for Boy Scouts. With all his therapy we haven't been able to start working on any badges, so he was pretty psyched to get his first one done.
Todd and I were so excited for the boys to get this opportunity and couldn't wait to see them when they got off the plane. We had expectations of ear-to-ear grins and lots of talk about how cool it was.
Things didn't go quite as planned. As I mentioned Jake was pretty tired, they got the very last flight so we had to wait about 2 1/2 hours in the hanger, and it was getting pretty warm. They were both excited to go and a little bit nervous as they headed out to the plane. Everyone got buckled in and off they went. We were surprised to see the plane land after only about 20 minutes but figured it had been a long morning and the pilot was ready to wrap things up. We went out to meet the boys, Jake was sort of smiling and Luke looked annoyed. We found out pretty quickly that Jake had started to feel queasy shortly after they got airborne due to the warmth inside the plane and a little turbulence so the pilot offered to head back which Jake accepted. Luke was having a great time so wasn't very happy his flight was cut short. As Jake told him, when he's a boy scout and gets to be in the front seat, he'll be in charge. I think they ultimately did enjoy the experience, it just didn't last quite as long as expected.
The ironic thing about this is Saturday was the worst day he's had all summer. His walking wasn't very good, his arm was contracted up near his chest and even cognitively, he was just a little off. The good thing is, we know exactly why...he was exhausted. Friday, he had a really hard therapy session in the morning, then we went to acupuncture where they've been doing a movement based treatment. (Instead of lying down and relaxing, he is getting several needles in his head and he does a series of movements with the right side of his body that he had to imitate with left side.) He then went to a friend's house for a few hours and finally had a class Friday night for his aviation merit badge and didn't get home until about 10:00. Saturday, we had to be out of the house by 8:00 a.m. for the 2nd part of the aviation badge where he went on his flight. Add to that, we could have eaten a lot better on Friday which didn't help anything. Take-out pizza when his body was depleted probably wasn't the best choice.
It was so hard to see him struggle, he really hasn't had any type of regression since well before school got out. It was also a really good reminder for us that we need to keep his activity level in check, make sure he gets plenty of rest and that we're eating well...all three of those being out of balance took their toll. We spent the rest of the weekend keeping things pretty calm and getting everything else back on track. He was doing much better today which was so good to see.
In the midst of all this, the boys got to take their first flight in a small four-seater plane on Saturday. There is an organization called Young Eagles that offers free flights to kids, and Jake got the opportunity to go on Saturday. Taking the ground school class on Friday night and the flight on Saturday allowed him to complete his aviation merit badge for Boy Scouts. With all his therapy we haven't been able to start working on any badges, so he was pretty psyched to get his first one done.Todd and I were so excited for the boys to get this opportunity and couldn't wait to see them when they got off the plane. We had expectations of ear-to-ear grins and lots of talk about how cool it was.
Things didn't go quite as planned. As I mentioned Jake was pretty tired, they got the very last flight so we had to wait about 2 1/2 hours in the hanger, and it was getting pretty warm. They were both excited to go and a little bit nervous as they headed out to the plane. Everyone got buckled in and off they went. We were surprised to see the plane land after only about 20 minutes but figured it had been a long morning and the pilot was ready to wrap things up. We went out to meet the boys, Jake was sort of smiling and Luke looked annoyed. We found out pretty quickly that Jake had started to feel queasy shortly after they got airborne due to the warmth inside the plane and a little turbulence so the pilot offered to head back which Jake accepted. Luke was having a great time so wasn't very happy his flight was cut short. As Jake told him, when he's a boy scout and gets to be in the front seat, he'll be in charge. I think they ultimately did enjoy the experience, it just didn't last quite as long as expected.
Sunday, July 20, 2014
A Weekend Off
Not a lot of new info to share this week...Jake is still plugging along in therapy and very excited this is his last week of intensive PT for awhile.
We took the weekend off from our errands/to do list and instead we just hung out with the boys which was so much fun. We played putt-putt, hung out in the back yard, had a bean bag toss competition, went to the pool, and spent time with extended family celebrating birthday's. It was such a nice weekend. We hadn't played putt-putt in a really long time and got there early before it got too hot and crowded. Jake was definitely getting tired but seemed to be having a good time. Once again, those crazy things you take for granted...walking through a putt-putt course. You forget how much walking, stepping over things and standing it is. It was nice to see him using his left hand to carry the ball and try and use both hands to swing the club.
Everyone ended the weekend a bit tired, but it was a good tired.
Everyone ended the weekend a bit tired, but it was a good tired.
Sunday, July 13, 2014
Bubbles
I am really starting to look forward to the weekends more than usual since it's a nice break from all the running we do during the week. It's hard to believe it's already been a month since Jake started intensive therapy. Only two weeks to go, at least for the PT portion!
The only appointment Jake has on the weekends is stretching on Saturday morning. We had very little else planned this weekend, which was a rare treat. Last night we went to Drums along the Rockies which is a regional drum and bugle corp competition. With Jake's love of drumming we thought the boys would really enjoy it. We had never been to one so didn't quite know what to expect. There were 11 different groups competing from several different states and it was really impressive. The musicians were extremely talented and their precision was unbelievable. I saw Jake on several occasions tapping out the beat with his foot or right hand. We all really enjoyed it.
Today was spent at home with the exception of some quick grocery shopping. I am realizing I need to slow down and take time when the boys ask me to play a game or do something else with them. I find I get so caught up at times trying to get things done, I'm not making time for what's really important...them. We made time tonight and it reinforced that I need to do it more often. After dinner we sat outside and roasted s'mores on the fire pit and then played with giant bubbles. I have been seeing this homemade bubble mix on the internet and we decided to give it a try. (We also made a giant bubble holder with a long piece of string that is threaded through two straws and then tied together. It ends up making a square and the straws as the handles).Luke did great and was making several large bubbles. It's one of those things you take for granted being able to do...use both hands to pull part the bubble holder and run backwards to make the bubble. Jake tried so hard to get his to work. He was doing such a good job using both his right
and left hand to spread the bubble holder apart while walking backwards as quickly as he could but a bubble would start to form then pop or he would accidentally stick his left finger through the bubble. In very typical Jake fashion though, he kept trying and got excited for Luke when he made a really big one. Despite not having great success, he was having fun!
They finally decided to work together, each held a side of the bubble holder and got lucky when a small gust of wind came up and created their bubble. I would have to say the bubbles were a big hit and I was asked to make another batch tomorrow, but a bigger batch of mix. It was such a nice, relaxing way to end the weekend and a good reminder that my to do list can wait. There probably aren't too many more years that they'll want to hang out with us at night and blow giant bubbles. :-)
Sunday, July 6, 2014
Swimming and the 4th
Jake worked so hard in therapy this past week. He had really long days back to back on Wednesday and Thursday since Friday was the 4th, but then got a three day weekend. He is really making some good progress in the pool with his swim therapy too. He's only gone three times and was actually swimming this week. It is so good to see him getting comfortable in the water again, it's been a long time coming...
Last summer right after we got home, we were so excited to take him to the neighborhood pool. His OT kept talking about what good therapy it would be to walk in the pool and we figured he would love doing something "normal" and playing with Luke in the water. We hadn't taken into consideration that his body had forgotten how to swim. Within a few minutes of being in the pool he realized he couldn't swim, got really upset and a bit scared. It was the first of many "why didn't we think of that" moments we encountered after being home and we felt horrible we hadn't better prepared him. When we were in Mexico over spring break, he got in the pool but never where he couldn't touch the bottom. I've suggested going to the pool several times this summer and Jake has only gone in a few times. I hated seeing him miss out on having fun in the pool or looking very hesitant when he would get in. I think he finally overcame all of that this past week.
We were at the pool on Monday and he was playing around in the shallow end but had a pool noodle under his arms for added security. The boys kept making their way further into deeper water and Jake was kicking along just fine. Next thing I know, the noodle slipped out from under his arm, he was bobbing under the water and started to panic since he couldn't touch the bottom. I jumped in and gave him back the noodle and expected he would want to get out. He didn't, he just kept playing. While I was a bit flustered, I was so pleased he stayed in. He was sitting with me drying off a little while later and said "I think I'm over my fear of the water." Music to my ears! I'm hoping his swim therapy helps him continue to get even more comfortable in the water again.
The other highlight this week was of course the 4th. Jake really loves fireworks and was so bummed he missed seeing them last year. (We had missed them the year before too since everything was canceled due to the fire danger being so high.) He had recently got a new patriotic bow tie and was very excited to wear it. Between that and the flag pattern on his leg brace, he was all set to celebrate! The 4th is also Todd's birthday, so it's always a big holiday for us. We did a few of our own small fireworks and then took the boys to Parker for the big show and were not disappointed. It was so nice to spend the day together with nothing planned, no work, and no appointments.
Last summer right after we got home, we were so excited to take him to the neighborhood pool. His OT kept talking about what good therapy it would be to walk in the pool and we figured he would love doing something "normal" and playing with Luke in the water. We hadn't taken into consideration that his body had forgotten how to swim. Within a few minutes of being in the pool he realized he couldn't swim, got really upset and a bit scared. It was the first of many "why didn't we think of that" moments we encountered after being home and we felt horrible we hadn't better prepared him. When we were in Mexico over spring break, he got in the pool but never where he couldn't touch the bottom. I've suggested going to the pool several times this summer and Jake has only gone in a few times. I hated seeing him miss out on having fun in the pool or looking very hesitant when he would get in. I think he finally overcame all of that this past week.
We were at the pool on Monday and he was playing around in the shallow end but had a pool noodle under his arms for added security. The boys kept making their way further into deeper water and Jake was kicking along just fine. Next thing I know, the noodle slipped out from under his arm, he was bobbing under the water and started to panic since he couldn't touch the bottom. I jumped in and gave him back the noodle and expected he would want to get out. He didn't, he just kept playing. While I was a bit flustered, I was so pleased he stayed in. He was sitting with me drying off a little while later and said "I think I'm over my fear of the water." Music to my ears! I'm hoping his swim therapy helps him continue to get even more comfortable in the water again.
Sunday, June 29, 2014
Summer Continues On
Jake continues to work really hard in PT. In addition to the strength training, they are having him walk without his leg brace. (He still has the support inside his shoe for his ankle). We've often walked short distances without it, from the bedroom to the bathroom or as part of home exercises, but this is the most he's walked without the whole brace since the hospital. He walked across the gym, did six minutes on treadmill and back. Granted, it was all pretty slow, but he was able to do it and his ankle wasn't rolling. On Friday, he even walked without his brace while being pulled from the back with a resistance band. Pretty exciting to see.
The boys also fit in some fun stuff this week. They spent Tuesday with my Mom and Dad and went to Golden. We had some pool time midweek and they got to hangout with friends and have a sleepover. All in all a good week!
Sunday, June 22, 2014
Intensive Therapy Has Begun
This was the first week of Jake's six week intensive therapy schedule. I don't know if it's because we had three weeks off or because the schedule is a bit nuts, but I was exhausted by the end of the week! I'm used to having a busy schedule (just like most of us are) but not quite used to so many appointments in one day and spread out the way they are. I tried to schedule things this summer all on Monday, Wednesday and Friday so he can have Tuesday/Thursday off as well as the weekend. As he has said to me on more than one occasion, "I lost all of my summer last year being in the hospital." So in an effort to give him some fun time, we have a couple of pretty crazy days. Some of the appointments we had a choice of times on, others we didn't, so we just make it work.
Here's roughly what one of his weeks looks like:
Jake was pretty wiped at the end of the day on Monday and Wednesday and asked to go to bed about 7:30. PT is really focusing on building strength in his left leg, so they are working him pretty hard. On Wednesday, he did five sets of ten leg presses at 25 pounds with both legs. That was followed up with three sets of 15 at 12 pounds with his left leg. Then he did a bunch of side walking with a resistance band around his ankles, walking forward while being pulled with a resistance band from the back and he finally finishes with the treadmill. I was tired just watching him work so hard!
When we get home, he does rest for awhile, but is also trying to pack in summer fun, so is out jumping on the trampoline, playing games with Luke, hanging out with friends, so it's no wonder he's tired at the end of the day.
We realized last week that we are going to be hitting a lot of "firsts" this summer thinking back to where we were a year ago. Jake and Todd were talking Friday morning about how on the 21st last year, he was getting discharged from the ICU and was heading to the rehab floor. That was honestly one of the single toughest nights in the hospital because we were so unprepared for the shift in care from ICU to a general floor. Jake was having withdrawals from the sedation drugs he'd been on and was a mess. He wasn't sleeping, was constantly fidgeting, HATED his feeding tube (which he pulled out every opportunity he could), wasn't eating or drinking regular food and just wanted water. Tough, tough time. Makes me very thankful for a little bit of a crazy schedule. :-)
Here's roughly what one of his weeks looks like:
Jake was pretty wiped at the end of the day on Monday and Wednesday and asked to go to bed about 7:30. PT is really focusing on building strength in his left leg, so they are working him pretty hard. On Wednesday, he did five sets of ten leg presses at 25 pounds with both legs. That was followed up with three sets of 15 at 12 pounds with his left leg. Then he did a bunch of side walking with a resistance band around his ankles, walking forward while being pulled with a resistance band from the back and he finally finishes with the treadmill. I was tired just watching him work so hard!
When we get home, he does rest for awhile, but is also trying to pack in summer fun, so is out jumping on the trampoline, playing games with Luke, hanging out with friends, so it's no wonder he's tired at the end of the day.
We realized last week that we are going to be hitting a lot of "firsts" this summer thinking back to where we were a year ago. Jake and Todd were talking Friday morning about how on the 21st last year, he was getting discharged from the ICU and was heading to the rehab floor. That was honestly one of the single toughest nights in the hospital because we were so unprepared for the shift in care from ICU to a general floor. Jake was having withdrawals from the sedation drugs he'd been on and was a mess. He wasn't sleeping, was constantly fidgeting, HATED his feeding tube (which he pulled out every opportunity he could), wasn't eating or drinking regular food and just wanted water. Tough, tough time. Makes me very thankful for a little bit of a crazy schedule. :-)
Sunday, June 15, 2014
Continuation
We survived the week, Jake is now officially a middle schooler! It was definitively an emotional couple of days early in the week, but mostly tears of joy.
The boy's school honors about 20-25 kids each quarter at an assembly with awards for each letter of PACK - Personal Integrity, Achievement, Citizenship and Kindness. At the assembly on Monday, Jake was awarded with an Achievement award. It was a very fitting award to give him considering everything he's accomplished this year. He had no idea his name was going to be called and seeing the look on his face and watching him walk up the aisle to get high fives from all the kids was incredible. He was just beaming.
On Tuesday morning, we had "Continuation," which is a program to honor the 5th graders who have completed elementary school and will be continuing onto middle school next fall. Jake was so excited he was up and dressed at 6:30 in the morning, he doesn't leave for school until 8:30. :-) I left early to get seats for continuation so Todd got to see him off on the bus their last day. I'm actually glad I wasn't there, I know I would have started crying. As I was sitting in the gym waiting for the program to start, I was thinking about how a year ago on the last day of school, Jake was in critical condition in the ICU and hooked up to more machines and medicine than I care to remember. Pretty surreal. The kids processed in and most, including Jake, were grinning ear to ear. They sang a couple of songs and then showed a slide show of the year which is about when the tears started. It was finally time to call each student's name and give them their certificate signifying completion of 5th grade.
As each student's name was called, there was applause by their fellow classmates and the parents/family. When Jake was called, the applause from the room was completely overwhelming and heartwarming. I was filming and missed the last part because I couldn't stop the tears and had to put down the camera. You could literally feel the love and respect for Jake in that applause. Made me one very proud Mom. Here is the little bit of video I captured. http://youtu.be/3Rmtj6lXGfc
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Continuation ended with Jake and two of his best friends performing "Let it Be." Jake was on drums, Jack on the guitar and Connor was singing (he also rewrote the lyrics as "Time To Go"). Jake's music teacher came up with a modified drum set up that allowed Jake to play with his right hand but still have access to several different drums and cymbals. It was so cool to watch him play something close to a traditional drum set. Up until now at home, it's been just one drum and maybe a cymbal. I edited the video down quite a bit since it was almost 4 minutes long, just to share a little bit of the performance http://youtu.be/oLV87vMT_K4. The boys did a really good job, especially considering how little time they had to practice. It was the perfect way to end his time in elementary school.
As each student's name was called, there was applause by their fellow classmates and the parents/family. When Jake was called, the applause from the room was completely overwhelming and heartwarming. I was filming and missed the last part because I couldn't stop the tears and had to put down the camera. You could literally feel the love and respect for Jake in that applause. Made me one very proud Mom. Here is the little bit of video I captured. http://youtu.be/3Rmtj6lXGfc
Continuation ended with Jake and two of his best friends performing "Let it Be." Jake was on drums, Jack on the guitar and Connor was singing (he also rewrote the lyrics as "Time To Go"). Jake's music teacher came up with a modified drum set up that allowed Jake to play with his right hand but still have access to several different drums and cymbals. It was so cool to watch him play something close to a traditional drum set. Up until now at home, it's been just one drum and maybe a cymbal. I edited the video down quite a bit since it was almost 4 minutes long, just to share a little bit of the performance http://youtu.be/oLV87vMT_K4. The boys did a really good job, especially considering how little time they had to practice. It was the perfect way to end his time in elementary school.
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