I normally would feel very uncomfortable about promoting a fundraiser for Jake myself, but this one is a little different. Two girls who were in Jake's class last year started making and selling bracelets back in September to help raise money for his medical expenses. They came up with the idea completely on their own and I was so touched when one of the mom's contacted me to tell me about it. As I understand it, her daughter was very aware of all the costs after her Grandma had an ICU stay and she wanted to do something to help. Pretty extraordinary 10 year old girl.
I would love for their sale on Saturday to be a success because of all the time and work they've put in. They will be at the Tallyn's Reach Library at 23911 E Arapahoe Rd Aurora, CO 80016 this Saturday from 10-12:30. Jake and I are also planning in being there part of the time to support them. If you're in the area and could stop by, we'd really appreciate it.
Thursday, October 10, 2013
Sunday, October 6, 2013
Thankful We Are Past That...
I seem to be in a pattern of posting on Sunday nights. I have good intentions of posting mid week, but before I know it, the week is gone. I'm sure many of you can relate!
I ran into another mom from school today who I've known since Jake and her daughter were both in Kindergarten together. We've often talked about how thankful we are that our kids are close to their siblings (her youngest and Luke are also the same age) and the differences between raising boys vs. girls. We got to talking and she told me she's been praying for me to be able to look back and think "Remember when?" It really got me thinking, in many ways we are already there. Jake is out of the hospital, walking, going to school, not fixating as much, getting around the house independently, etc....so there are a lot of "I'm thankful we are passed that" moments each and every day.
Then this afternoon, I was sitting with Jake helping him make a rubberband bracelet and had a "I hate it that this is so hard for him" moment. For those of
you lucky enough to not be aware of the latest craze, consider yourself blessed! :-) Rainbow Looms are quite the thing now and using a crochet hook, small rubberbands and a plastic loom, the kids are making bracelets. (You can see Jake has several on his arm.) Anyway, before his aneurysm, this is the type of thing he would have sat down with, watched a few YouTube video's to get started, and gone to town. Today, he asked me to help him make one. I helped keep the loom steady, reminded him what color band went on next and what step he was on. He confirmed what he was doing with me during the whole process. He was so proud of himself when he finished, as he should have been. He did all the work, I was just there to help keep him on track. It was one of those mixed moments we have so often. So proud of what he has accomplished yet a little sad for what used to be. Watching the effort and concentration it took for something that would have previously been pretty effortless for him gets tough at times.
Then tonight, I had the opposite moment. I went up to tell the boys goodnight after Todd put them to bed and Jake met me in the hallway. He decided he wanted to lay out his clothes for tomorrow. Now, this sounds like not that big of a deal, but it was. When Jake isn't wearing his brace on his left leg, he is a bit unsteady and likes to have Todd or I right by him for assistance. I think I've mentioned before that the brace keeps his ankle from rolling and his foot at a 90 degree angle which makes walking easier. We are still waiting for the muscles in his lower leg that stimulate the ankle lift to come back. Anyway, the fact that he got out of bed and walked across the room by himself in only his socks was pretty remarkable. He hates walking without his brace, let alone without shoes. It's the first time since he's been home from the hospital that he's done it on his own and without it being part of his home therapy. It was a pure "wow, look at you!" moment and I had none of the thoughts that "this shouldn't be so hard for him, he used to do it all the time."
I know we will continue to have both kinds of moments, and probably for a very long time. It's just part of the process.
I ran into another mom from school today who I've known since Jake and her daughter were both in Kindergarten together. We've often talked about how thankful we are that our kids are close to their siblings (her youngest and Luke are also the same age) and the differences between raising boys vs. girls. We got to talking and she told me she's been praying for me to be able to look back and think "Remember when?" It really got me thinking, in many ways we are already there. Jake is out of the hospital, walking, going to school, not fixating as much, getting around the house independently, etc....so there are a lot of "I'm thankful we are passed that" moments each and every day.
Then this afternoon, I was sitting with Jake helping him make a rubberband bracelet and had a "I hate it that this is so hard for him" moment. For those of
you lucky enough to not be aware of the latest craze, consider yourself blessed! :-) Rainbow Looms are quite the thing now and using a crochet hook, small rubberbands and a plastic loom, the kids are making bracelets. (You can see Jake has several on his arm.) Anyway, before his aneurysm, this is the type of thing he would have sat down with, watched a few YouTube video's to get started, and gone to town. Today, he asked me to help him make one. I helped keep the loom steady, reminded him what color band went on next and what step he was on. He confirmed what he was doing with me during the whole process. He was so proud of himself when he finished, as he should have been. He did all the work, I was just there to help keep him on track. It was one of those mixed moments we have so often. So proud of what he has accomplished yet a little sad for what used to be. Watching the effort and concentration it took for something that would have previously been pretty effortless for him gets tough at times.Then tonight, I had the opposite moment. I went up to tell the boys goodnight after Todd put them to bed and Jake met me in the hallway. He decided he wanted to lay out his clothes for tomorrow. Now, this sounds like not that big of a deal, but it was. When Jake isn't wearing his brace on his left leg, he is a bit unsteady and likes to have Todd or I right by him for assistance. I think I've mentioned before that the brace keeps his ankle from rolling and his foot at a 90 degree angle which makes walking easier. We are still waiting for the muscles in his lower leg that stimulate the ankle lift to come back. Anyway, the fact that he got out of bed and walked across the room by himself in only his socks was pretty remarkable. He hates walking without his brace, let alone without shoes. It's the first time since he's been home from the hospital that he's done it on his own and without it being part of his home therapy. It was a pure "wow, look at you!" moment and I had none of the thoughts that "this shouldn't be so hard for him, he used to do it all the time."
I know we will continue to have both kinds of moments, and probably for a very long time. It's just part of the process.
Sunday, September 29, 2013
Longer Days and the Broncos
I realized tonight that my posts have been following the same theme as many of our days, ups and downs. I try really hard to stay focused on each day and be positive, but there are times when dealing with all of this just becomes too much for all of us. While Jake is doing really well all things considered, it's hard to see him struggle with so many things that life throws at him. Had I posted earlier in the weekend, this would have been one of the "downs." He had a rough day on Friday (first day of PE, a lot of appointments and a long week), and that combined with some other things going on, took me to the place where I needed to have a really good cry and get it all out. I finally started to shake off the funk I was in on Saturday afternoon and ended the weekend on a better note.
We extended Jake's time at school three days last week to 3 1/2 hours. His fatigue levels are improving and we really wanted to give him the opportunity to participate in some of the things he's really been missing at school. One day he stayed for lunch and the other two he went to Art and PE. He got to have lunch in the classroom with a few friends since we were concerned that the noise and activity level in the cafeteria would be too much right now. He was so happy when he came home on Monday and told me all kinds of funny things his friends had shared. He's always really loved going to Art and was so happy to be back in class. To be honest, PE was probably not the other special we would have picked for Jake this first week, but it's what he wanted to do and I knew the PE teacher would make accommodations so he could participate with his class. A fire drill during PE threw a bit of a kink in things and class didn't end up going as he expected. After a talk with the PE teacher about what happened and how things will look next week, he's excited to go back again.
Jake got a pretty amazing surprise on Saturday afternoon. A couple of my brother Ryan's friends(Zach and Taryn Wilson and Garrett Townsend)
had been working on something for Jake for awhile and were able to make it happen last week. They had gotten in touch with JD Walton (center for the Denver Broncos, currently on injured reserve) to get Jake an autographed football. They were hoping for a few signatures and were so excited when they picked it up and saw that the entire team had signed it. Zach, Taryn and Ryan came over Saturday with the ball and a display case. Ryan was very worried the boys might try and play catch with it and wanted to make sure it was protected, we assured him that wasn't going to happen. :-) Jake's been getting into football more since he's been involved with the Warriors and has been watching the Bronco games with us, so he was pretty excited. And I think a little shocked to be honest! It was really cool to look over the ball and see all the players names he recognized. He couldn't wait to show my dad today who is a HUGE Bronco fan and he was blown away. Todd and I were really moved that Ryan's friends wanted to do this for Jake and appreciate all that went into making this happen. He is getting quite the memorabilia collection between this and the things Rush sent!
We extended Jake's time at school three days last week to 3 1/2 hours. His fatigue levels are improving and we really wanted to give him the opportunity to participate in some of the things he's really been missing at school. One day he stayed for lunch and the other two he went to Art and PE. He got to have lunch in the classroom with a few friends since we were concerned that the noise and activity level in the cafeteria would be too much right now. He was so happy when he came home on Monday and told me all kinds of funny things his friends had shared. He's always really loved going to Art and was so happy to be back in class. To be honest, PE was probably not the other special we would have picked for Jake this first week, but it's what he wanted to do and I knew the PE teacher would make accommodations so he could participate with his class. A fire drill during PE threw a bit of a kink in things and class didn't end up going as he expected. After a talk with the PE teacher about what happened and how things will look next week, he's excited to go back again.
Jake got a pretty amazing surprise on Saturday afternoon. A couple of my brother Ryan's friends(Zach and Taryn Wilson and Garrett Townsend)
Monday, September 23, 2013
A Good Weekend
Jake's stamina is definitely improving. We had a fairly busy three-day weekend and he was a trooper. On Friday, there was a case review on Jake at Parker Adventist Hospital with the Paramedics, EMT's and hospital staff that worked on Jake. We were invited to come in at the end so they could see Jake. Because of the rarity of Jake's case, they opened it up to other staff for continuing education credits, so we walked into a room full of about 30 people. Jake was asked to come up to the front of the room and each person who was involved in his care came up, introduced themselves and shook his hand or gave him a hug. We were so proud of how he handled himself. This is a picture with Dr. Markey, the neurosurgeon who discovered the aneurysm and bleed, then put in a bolt (basically drilled a hole in Jake's head) to relieve the brain pressure. He was so nice and personable and Jake's been retelling a few of his funny comments all weekend. His favorite was "What, you don't remember me?" They also gave him a firetruck they had all signed. We were reminded again how lucky we are that Jake is where he is today and greatly appreciated the opportunity to thank everyone in person. 
The boys had another football game with the Warriors on Saturday. The
team is doing such an amazing job of including both of the boys. Luke was
asked to be the kickoff tee retriever and seemed to really enjoy it, but
was completely wiped out since the team scored over 40 points. Jake
stood for part of the game right with the players on the sidelines and
they really made him feel a part of things. The boys got a nice surprise
at the end of the game when the players took off their pads and all had
on "Team Jake" and "Team Luke" t-shirts they had made the night before.
After we got home, Jake spent most of the afternoon outside. He and Todd played some frisbee, then Jake hung out with the neighbor kids. While he can't quite keep up and play all the things they do, he was able to walk around with them and participate and just hang out. It was so nice to see him so happy and having fun.
On Sunday we had a family birthday party with Todd's family to celebrate his mom's and Luke's birthday. Both boys were happy to see their cousins and hang out for the afternoon.
All in all a very good weekend!
Thursday, September 19, 2013
Pluggin' Away
Geesh, it's been a busy week! It's been one of those weeks were it seems like we've had extra stuff on our schedule every day. Jake is holding up pretty well but I am exhausted!
Jake and I went back down to Children's on Tuesday for his one month post discharge appointment with his rehab doctor. We were so surprised to walk into the waiting area and see one of the friend's Jake made while in the hospital and another family we met during our stay. They were both there for out patient therapy and we were bummed we didn't get a chance to visit since the doctor was running on time. (Can't complain about that though!) The doctor said Jake is doing really well and progressing as he should. It's hard for us to see the progress since we've passed that point where he makes huge gains from one day to the next like when he was in the hospital. Big difference is, then his therapies were twice a day and that was all he had to concentrate on. Now he's part of daily family life, going to school, having homework, socializing, and just "living," so he recovery is not as concentrated in one area.
When I look back though at where he was a month ago, I can see the progress. He's so much more stable when he's walking and can go further distances without the wheelchair. His stamina is also improving and I'm noticing he doesn't come home from school completely wiped out. He is getting himself dressed faster and starting to do little things like carry his plate to the sink after he eats. He is also starting to drum a little again and Todd is really working with him to use his left hand and in the proper position. Jake really wants to take drum lessons again so we're doing what we can to help him achieve that goal. My favorite noticeable progress is the expression he has gotten back in his face. For a long time he didn't have much movement on the left side of his face and when he smiled, only the right side turned up. Now, he has his cute full smile back which helps get me through the day.
Jake and I went back down to Children's on Tuesday for his one month post discharge appointment with his rehab doctor. We were so surprised to walk into the waiting area and see one of the friend's Jake made while in the hospital and another family we met during our stay. They were both there for out patient therapy and we were bummed we didn't get a chance to visit since the doctor was running on time. (Can't complain about that though!) The doctor said Jake is doing really well and progressing as he should. It's hard for us to see the progress since we've passed that point where he makes huge gains from one day to the next like when he was in the hospital. Big difference is, then his therapies were twice a day and that was all he had to concentrate on. Now he's part of daily family life, going to school, having homework, socializing, and just "living," so he recovery is not as concentrated in one area.
When I look back though at where he was a month ago, I can see the progress. He's so much more stable when he's walking and can go further distances without the wheelchair. His stamina is also improving and I'm noticing he doesn't come home from school completely wiped out. He is getting himself dressed faster and starting to do little things like carry his plate to the sink after he eats. He is also starting to drum a little again and Todd is really working with him to use his left hand and in the proper position. Jake really wants to take drum lessons again so we're doing what we can to help him achieve that goal. My favorite noticeable progress is the expression he has gotten back in his face. For a long time he didn't have much movement on the left side of his face and when he smiled, only the right side turned up. Now, he has his cute full smile back which helps get me through the day.
Sunday, September 15, 2013
Warriors
I've been waiting to do this post for almost two months and am so excited I get to share this with you today complete with pictures.
When Jake was still in ICU, we got a phone call from the Principal of our school asking what we would think about Jake and Luke being honorary captains of his 13 year old son's football team. In addition to teaching them how to play football, the coaches want to teach them how to grow up to be good men. They are trying to impart important life lessons and the team has done things like participating in a toy drive at Christmas. Principal Smith (now Coach Chris to the boys since he is no longer principal of their school) told us what happened to Jake really affected his son Kaden and he thought Jake would offer some good perspective to his team. Up until now, neither of our boys have been involved much with team sports and we thought it might be a good experience for them.
In late July, Chris and his family came to the hospital so his sons could meet Jake and give Jake and Luke their jerseys. Those of you that have seen Luke know he absolutely loves his an wears it all the time. Jake has wore his some as well (it had pretty stiff competition with his numerous Rush shirts) and told just about everyone he encountered about being asked to be a honorary captain. A few weeks ago the head coach, Bob and his son along with Chris and his son came to the house to talk to all of us about being honorary captains and what it meant to be part of the team. The boys were really excited and went to a practice this past Thursday to meet the team. I wasn't able to go with Todd and the boys, but from the excitement I saw when they got home, they had a great time and it sounds like a pretty impressive group of boys. 
I am really excited about the upcoming season and what this will mean to both the boys.
Oh, and the team won, 46-0. :-)
Wednesday, September 11, 2013
It's Been a Month
Jake has now been home one month and it seems like we are still learning something every day. Today I learned it's ok to cry with Jake when he is frustrated and overwhelmed.
When we got home from school I could tell something was bothering him, he was really quiet and just had that look on his face. He ended up bursting into tears because he doesn't understand why everything is so hard. He's right, a lot of things are harder for him right now that he never used to give any thought to. Walking, using his hand to hold his paper in place, taking the lid off a water bottle, etc.
Today he was referring to some things they were working on in Math, he was just having a hard time getting it. I explained to him that even before his aneurysm there were times he didn't understand things right away and reminded him of some of the struggles he'd had with certain math concepts last year when doing homework. I also told him that not all kids understand new material the first time it's explained and it's ok to ask for help. That's when he really broke down and said "They are working so hard to teach me and I just don't understand and I knew how to do this before. Why does everything have to be so hard?" And with that, I just sat down, hugged him, and cried with him. He's right, just about everything he is doing just to function right now is hard and takes a lot of effort. He has to concentrate and work at everything he does whether it be walking and taking big strides, getting dressed, pushing himself up off a chair, going to therapy....his whole life is about focus and nothing is really effortless anymore. It's a lot to have to deal with and my heart just broke for him today not getting to be a regular 10 year old kid like he was just a few months ago.
Another thing we learned this weekend is that we need to make time for him to socialize. With his schedule as busy and structured as it is, there has been very little time for fun and talking with his friends. He's not riding the bus, going out to recess or eating lunch at school, which are all the times kids socialize. He's pretty much stuck with me for most of the day and a therapist or his home tutor for about an hour a day. He really misses being with his friends. We went to his den meeting for scouts last night and I could tell he was tired, but he wanted to stay and just hang out and interact. It's such a hard balance and one more thing we need to figure out how to fit in so he can have a little bit of normal.
My logical side knows all of this will continue to improve and it's just going to take time, but my heart breaks for the loss of the carefree life he used to have.
When we got home from school I could tell something was bothering him, he was really quiet and just had that look on his face. He ended up bursting into tears because he doesn't understand why everything is so hard. He's right, a lot of things are harder for him right now that he never used to give any thought to. Walking, using his hand to hold his paper in place, taking the lid off a water bottle, etc.
Today he was referring to some things they were working on in Math, he was just having a hard time getting it. I explained to him that even before his aneurysm there were times he didn't understand things right away and reminded him of some of the struggles he'd had with certain math concepts last year when doing homework. I also told him that not all kids understand new material the first time it's explained and it's ok to ask for help. That's when he really broke down and said "They are working so hard to teach me and I just don't understand and I knew how to do this before. Why does everything have to be so hard?" And with that, I just sat down, hugged him, and cried with him. He's right, just about everything he is doing just to function right now is hard and takes a lot of effort. He has to concentrate and work at everything he does whether it be walking and taking big strides, getting dressed, pushing himself up off a chair, going to therapy....his whole life is about focus and nothing is really effortless anymore. It's a lot to have to deal with and my heart just broke for him today not getting to be a regular 10 year old kid like he was just a few months ago.
Another thing we learned this weekend is that we need to make time for him to socialize. With his schedule as busy and structured as it is, there has been very little time for fun and talking with his friends. He's not riding the bus, going out to recess or eating lunch at school, which are all the times kids socialize. He's pretty much stuck with me for most of the day and a therapist or his home tutor for about an hour a day. He really misses being with his friends. We went to his den meeting for scouts last night and I could tell he was tired, but he wanted to stay and just hang out and interact. It's such a hard balance and one more thing we need to figure out how to fit in so he can have a little bit of normal.
My logical side knows all of this will continue to improve and it's just going to take time, but my heart breaks for the loss of the carefree life he used to have.
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