Todd and I had Jake's IEP meeting on Friday and were talking on the way there about how far Jake has come in the past year. (For those of you who don't know, an IEP is an Individualized Education Plan for kids that need accommodations and modifications at school. Jake was put on one after his stroke.) Last year about this time, Jake had just started going to school full days. His walking had really regressed after out vacation and he was having a very hard time getting around at school. I remember how hard it was seeing him struggle, he had to go back to using the bike at school just to get around and they would even bring it out to the car in the morning to help him get inside.
A year ago, he still fatigued really easily and had both OT and PT a few times a week. I so clearly remember his IEP meeting last April. There were about 12 in attendance since we were talking about his transition from elementary school to middle school. We had a lot of concern about how he would handle a new much larger school, several different teachers and everything else that comes with middle school. It's customary for different people who have worked with Jake give a report on his status, and I remember getting emotional during several of them. It was so hard to hear all the areas he had made improvements but still had so far to go.
Fast forward to this year's IEP meeting...it was the first one where I haven't cried which made me pretty happy. :-) I don't know how much of it was I'm getting more used to these meetings vs. he showed tremendous growth this year. We heard a lot of good things and the list of modifications and accommodations is getting shorter. One big thing we took great pride in was hearing how much he is participating in class with thoughtful and constructive comments, and that he is doing really well. Not "doing well considering he's had a stroke," but just really well. There have been a few bumps this year, but overall, it's been a good transition to middle school. The thing we have to remember is a lot of kids struggle with organization or taking initiative for example. So many of the things we worry about are just normal 6th grade boy stuff, but Jake is under a microscope so things seem like a bigger deal. He still has goals he is working towards, will continue with accommodations like extended time on tests and leaving class a few minutes early to avoid crowded halls. He also has the choice of taking a break during his homeroom when he's tired. But he's getting around the school on his own, keeping up with his classmates academically and overall succeeding. His new leg brace has really helped his walking and stability and he is getting more and more use of his left hand/arm. We are happy he is still making progress and will continue doing whatever we can to support his recovery.
Sunday, April 19, 2015
Sunday, April 5, 2015
Spring Break
The boys were on Spring Break this past week and we decided to take the opportunity to go visit my grandpa who recently moved from Oregon to Las Vegas due to his declining health. Both my uncles live in Vegas and my parents have been there for the past two months helping him transition to a skilled nursing facility. It's been a pretty bumpy road the past few months so this was a last minute trip and unfortunately Todd had some critical things going on at work so it was just the boys and I.
While the main purpose of our trip was to see my grandpa and my parents, we tried to get in a few fun things for the boys too. The weather was really nice the first few days, so my uncles took us out to Lake Mead for some boating. It was the boys first time on a boat and the loved it.
It's so interesting how different our boys are. They were this way before Jake's stroke, but their differences are just more pronounced now. Luke is much more adventurous and would have jumped in the lake at the dock if I let him. He road in the front of the boat where it was the most windy and wet, he was also the first one to get pulled in the inner tube. Jake on the other hand is far more cautious and needs to really think things through first. He wasn't going to even wear his swimsuit since he had no intention of getting wet, sat in the back of the boat a bit more protected and took a long time (and a little bit of convincing) to decide he wanted to try the tube. I was so afraid if we left the lake and hadn't tried it, he would regret it. The water was pretty cold, but they both ended up having a really good time.
They also got to have a guys night out with my dad, uncle and cousin and went to the Medieval show at the Excalibur. They serve pretty big portions of food with no silverware, then watch a jousting match. Jake had jokingly told me earlier in the day he was going to sneak a fork in his pocket (he gets very concerned about germs), so I was surprised when my dad told me Jake just tore into is food like he hadn't eaten in three days.
It was a pretty quick trip but I am so glad we were able to go. We got to visit with my grandpa every day and even took him and Jake for a walk with both of them in their wheelchairs. I was so proud of how patient and well-behaved the boys were when we were visiting him. They didn't complain about being bored or ask when we were leaving, instead they answered his questions (which were often repeated) and just hung out with him. Luke said to me as we were leaving that "Grandpa is a really nice man, I'm glad we got to visit him." Made my day.
While the main purpose of our trip was to see my grandpa and my parents, we tried to get in a few fun things for the boys too. The weather was really nice the first few days, so my uncles took us out to Lake Mead for some boating. It was the boys first time on a boat and the loved it.It's so interesting how different our boys are. They were this way before Jake's stroke, but their differences are just more pronounced now. Luke is much more adventurous and would have jumped in the lake at the dock if I let him. He road in the front of the boat where it was the most windy and wet, he was also the first one to get pulled in the inner tube. Jake on the other hand is far more cautious and needs to really think things through first. He wasn't going to even wear his swimsuit since he had no intention of getting wet, sat in the back of the boat a bit more protected and took a long time (and a little bit of convincing) to decide he wanted to try the tube. I was so afraid if we left the lake and hadn't tried it, he would regret it. The water was pretty cold, but they both ended up having a really good time.
They also got to have a guys night out with my dad, uncle and cousin and went to the Medieval show at the Excalibur. They serve pretty big portions of food with no silverware, then watch a jousting match. Jake had jokingly told me earlier in the day he was going to sneak a fork in his pocket (he gets very concerned about germs), so I was surprised when my dad told me Jake just tore into is food like he hadn't eaten in three days.
It was a pretty quick trip but I am so glad we were able to go. We got to visit with my grandpa every day and even took him and Jake for a walk with both of them in their wheelchairs. I was so proud of how patient and well-behaved the boys were when we were visiting him. They didn't complain about being bored or ask when we were leaving, instead they answered his questions (which were often repeated) and just hung out with him. Luke said to me as we were leaving that "Grandpa is a really nice man, I'm glad we got to visit him." Made my day.Sunday, March 22, 2015
Luke
I realized the other day that while this blog is about Jake, his brother Luke has been affected by all of this too and in a pretty big way. This past week Luke had his monthly pack meeting for cub scouts. Each month a different core value of scouts is covered, March was Compassion. They usually do an activity that coincides with the trait and Luke was asked by his cubmaster if he would be willing to talk to the other scouts about he helps Jake cope and their relationship. We told Luke about it and let him make the decision. He and I went on a long walk later that night and a lot of stuff came out about Jake.
The other person who would speaking at the meeting was a mom who's son has disabilities and since they would both be speaking, Luke connected her son and Jake together and said to me "But Mom, Jake isn't disabled." It isn't a label we've really used or think about, a lot of that is because we have been more focused on his recovery and progress. And to be honest, it's a tough label to place on your child. After I thought about it for a minute, I said to him "Jake had a really bad stroke that left him unable to use parts of his body the same as you do, so technically right now he does have a disability." He then asked me if Jake would be at the meeting because he was afraid if Jake heard Luke say he was disabled it would hurt his feelings. (Jake wasn't going.) He also seemed concerned that other people would think of Jake as disabled. I told him the reason they asked him to speak was to share about what he does to help Jake and how some things have changed. It was more about awareness so if one of the other scouts encountered someone "different" they might stop, think, and be more compassionate.
He thought about it a little longer and decided he would like to do it. I told him he could say and share whatever he was comfortable with. I was very antsy waiting for he and Todd to get home from the meeting to hear how things went. When he got home he came and whispered to me that he almost cried talking about Jake and had to take some deep breaths. After they went to bed, Todd and I talked about it and he said Luke did a really good job. We were really proud of him being willing to get up in front of a pretty big group of kids and adults and share some really personal stuff. He has grown up so much the past few years and sometimes seems far wiser than ten. He really is an amazing kid and has definitely got the compassion character trait nailed down.
The other person who would speaking at the meeting was a mom who's son has disabilities and since they would both be speaking, Luke connected her son and Jake together and said to me "But Mom, Jake isn't disabled." It isn't a label we've really used or think about, a lot of that is because we have been more focused on his recovery and progress. And to be honest, it's a tough label to place on your child. After I thought about it for a minute, I said to him "Jake had a really bad stroke that left him unable to use parts of his body the same as you do, so technically right now he does have a disability." He then asked me if Jake would be at the meeting because he was afraid if Jake heard Luke say he was disabled it would hurt his feelings. (Jake wasn't going.) He also seemed concerned that other people would think of Jake as disabled. I told him the reason they asked him to speak was to share about what he does to help Jake and how some things have changed. It was more about awareness so if one of the other scouts encountered someone "different" they might stop, think, and be more compassionate.
He thought about it a little longer and decided he would like to do it. I told him he could say and share whatever he was comfortable with. I was very antsy waiting for he and Todd to get home from the meeting to hear how things went. When he got home he came and whispered to me that he almost cried talking about Jake and had to take some deep breaths. After they went to bed, Todd and I talked about it and he said Luke did a really good job. We were really proud of him being willing to get up in front of a pretty big group of kids and adults and share some really personal stuff. He has grown up so much the past few years and sometimes seems far wiser than ten. He really is an amazing kid and has definitely got the compassion character trait nailed down.
Sunday, March 8, 2015
Free Weekend
Jake definitely benefited from a weekend free from appointments. The boys had a long weekend off from school, so we were able to schedule things so he didn't have stretching or acupuncture on Saturday. Instead he got to hang out with his good friend on Saturday and outside with Luke and some of the neighbors most of Sunday. It was so nice to see him doing normal kid stuff and having fun. It seems like so much of his life is appointments, homework, therapies, he doesn't have a lot of time or energy left to just be a kid.
We did have a small incident today with one of the neighbors, but in a strange way, ended up being a sign of progress. Both our boys have always been very protective of each other and ready to come to the other's defense when they feel their brother has been wronged. There have been a few instances in the past year and a half where Luke has come to Jake's defense, but there hasn't really been a situation where Jake had a opportunity to stand up for Luke like he would have before his stroke. The majority of the time, there is no real confrontation with someone, it takes place instead with Todd and I as part of the conversation of what happened. Luke would get very upset about something that happened to Jake and talk about wanting to confront that person and what he would say. I've seen both of them over the years get very emotional wanting to right a wrong.
Today, the roles were reversed. I won't go into details with what happened, but Luke realized after the kids left that something of his got damaged (by accident), and he wasn't too happy about it. He was really upset and Jake stood up and said in a rather stern voice "I'm going to go talk to _____!" We stopped him from going outside to confront the other child, but it was so cool to see him playing the role of big brother again to Luke. Ever since his stroke, Jake has been more passive and in a lot of ways the boys have reserved roles. Luke is more the big brother that Jake relies on for things. Jake could see Luke was hurting and got mad on his behalf. Empathy and reading other people's feeling is another trait that was affected by Jake's stroke and in a weird way, it was nice to see him upset on Luke's behalf and feeling bad for his brother.
Strange as it is, it was great progress and nice to see.
We did have a small incident today with one of the neighbors, but in a strange way, ended up being a sign of progress. Both our boys have always been very protective of each other and ready to come to the other's defense when they feel their brother has been wronged. There have been a few instances in the past year and a half where Luke has come to Jake's defense, but there hasn't really been a situation where Jake had a opportunity to stand up for Luke like he would have before his stroke. The majority of the time, there is no real confrontation with someone, it takes place instead with Todd and I as part of the conversation of what happened. Luke would get very upset about something that happened to Jake and talk about wanting to confront that person and what he would say. I've seen both of them over the years get very emotional wanting to right a wrong.
Today, the roles were reversed. I won't go into details with what happened, but Luke realized after the kids left that something of his got damaged (by accident), and he wasn't too happy about it. He was really upset and Jake stood up and said in a rather stern voice "I'm going to go talk to _____!" We stopped him from going outside to confront the other child, but it was so cool to see him playing the role of big brother again to Luke. Ever since his stroke, Jake has been more passive and in a lot of ways the boys have reserved roles. Luke is more the big brother that Jake relies on for things. Jake could see Luke was hurting and got mad on his behalf. Empathy and reading other people's feeling is another trait that was affected by Jake's stroke and in a weird way, it was nice to see him upset on Luke's behalf and feeling bad for his brother.
Strange as it is, it was great progress and nice to see.
Sunday, February 22, 2015
A New Brace
Fast forward six months post-stroke to last January. His ankle muscles still hadn't returned but now he had the added issue of excessive tone. The tightness was causing his ankle to roll to the outside of his foot. He did six weeks of serial casting to try and increase range of motion for his ankle. Afterwards, he was fit for a new brace. It was a softer plastic around his foot and offered more support for the ankle (it's pictured on the right.)
Now here we are a year later. While his range of motion in the ankle continues to improve, he is still dealing with the excessive tone. He got botox back in October which helped quite a bit but wore off in about three months. While the ankle continues to roll to the outside, it's taking his knee with it. His PT has been very concerned about the pressure and stress this is putting on his knee and what that could mean down the road. If you've seen him walk, it's almost like his knee gives out a little as he takes a step and is pointed about 10-15 degrees to the left instead of straight ahead. She came up with the idea to put him in a full leg brace which is pictured on the left. It's pretty massive and goes high up on his thigh. It's got metal rods going down each side of the leg which force the knee to point straight ahead. The nice thing about this one is the top part can be removed and he is left with a brace very similar to what he had before below the knee. It offers a little more support for the outside ankle too.
He was excited about the idea of the brace since it was supposed to help him walk better. When we went to pick it up and he saw it, you could see the shock on his face. Neither of us quite realized how big the brace was going to be. He said to me in the car on the way home that he doesn't understand why his braces keep getting bigger, they should be getting smaller. In retrospect, I wonder the same thing, but there was no way to know at the time how long it would take his ankle to recover. He was also really worried it was going to show under his pants and what it's going to look like when he wears shorts this summer. He got a lot of questions at the beginning of school about his brace and now figures he'll get more. Luckily it doesn't really show under his jeans so that made him feel a little better. The good thing is the brace seems to be helping, we've really noticed an improvement in his walking. Having his knee properly aligned caused him some pain those first few days, but that has gone away. The idea is that his leg will stay in proper alignment after some time due to muscle memory. At this point, we're just taking it one day at a time and are grateful he's got it.
Sunday, February 1, 2015
Jake's Going to See Rush!
So first, the big news...we found out about a week ago that Rush is touring again this summer, so Jake is finally going to get to see his favorite band in concert! For those of you who may not know, Jake and Todd had tickets to go back in August 2013. He was still in the hospital, couldn't go and was pretty bummed out. He also ended up having his second surgery that same day. (This picture is from when he was still in the hospital with all of his swag Rush send him thanks to Todd, Luke and several friends sending them letters about Jake's situation.)We got tickets for Todd and the boys on Friday and Jake is already counting down the days. There is a big red circle on his calendar for July 11th and I think he said this morning it's 160 days away. :-) He's been trying to decide which Rush shirt he wants to wear and offered to lend Luke one "but only to borrow for the concert." I am so happy that Todd and the boys will get to experience this together. Its the first concert for both of them and I think it will be really memorable with how much impact Rush has had on Jake. Even now, it's his music of choice when he needs to zone out and relax. I still don't get how it's relaxing for him, but whatever works. As much as I would love to see Jake's reaction, the cost of the ticket would be completely wasted on me so I opted out and am letting it be a boys night out.
I think Jake has finally just about kicked his cold. He ended up using his wheelchair all last week at school and his classmates were really great about getting him where he needed to go.We were so pleased that it didn't end up being a huge negative for him. The only thing I felt bad about was the concern from two of Jake's teachers that something bad had happened to Jake. (He was out Thursday and Friday and then shows up on Monday in a wheelchair.) I had communicated with his case manager but didn't think to send an email to all of his teachers. It's so different in middle school...word doesn't get around quite as quickly. His walking is looking better this weekend which is so nice to see.
Looking forward to the week ahead...
Sunday, January 25, 2015
The Cold Finally Hit
So the cold Jake has been dreading and worrying about finally hit this week. I'm actually surprised he's held off getting sick this long, his last cold was in the Spring. His walking deteriorated again and really slowed him down. We were hoping he was further enough along in his recovery a cold might not be so impactful but he wasn't so lucky. His body just doesn't have enough resources to fight off an infection and work on healing, so his walking gets worse, his arm gets tighter and he fatigues a lot easier. Honestly, it's no real surprise. I know how drained I feel when I'm sick and I'm not recovering from a massive stroke. Luckily, it seems to be a pretty minor head cold and not one of the more serious ones going around.
What makes this a little bit harder than before is being in middle school. There is so much more distance to cover between classes which just adds to him getting tired. We kept him home on Thursday and Friday so he could rest but making up all that missed work is going to be taxing too. We'll do what we can and if it takes a little longer to get caught up, so be it. We talked with him today about going back to school tomorrow and he's worried about getting around and having the other kids see him struggle walking. He asked if he could bring his wheelchair to school. He hasn't had to use it much at all lately and I was proud of him for recognizing that it will help even though he doesn't want to have to have it at school. Now we just need to figure out who's going to assist him with it since he doesn't have dedicated help anymore. :-)
What makes this a little bit harder than before is being in middle school. There is so much more distance to cover between classes which just adds to him getting tired. We kept him home on Thursday and Friday so he could rest but making up all that missed work is going to be taxing too. We'll do what we can and if it takes a little longer to get caught up, so be it. We talked with him today about going back to school tomorrow and he's worried about getting around and having the other kids see him struggle walking. He asked if he could bring his wheelchair to school. He hasn't had to use it much at all lately and I was proud of him for recognizing that it will help even though he doesn't want to have to have it at school. Now we just need to figure out who's going to assist him with it since he doesn't have dedicated help anymore. :-)
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