Fall Break and Botox

What a great week! The boys were on fall break this past week and got to spend a lot of time with their friends, grandparents and we even fit in a trip to the Denver Mint where coins are made. It was so nice to see Jake tired from having fun instead of from his normal busy schedule. We are trying to increase his stamina and endurance, so are letting him push himself a bit more.This picture was taken at a corn maze my mom took them too not too far from here. I don't know what Luke was standing on, but he's not taller than Jake, yet!

Back on the 17th, Jake got botox injections in five locations in his left arm and two in his left hamstring. I was never aware of any uses for botox other than cosmetic and was surprised to find out it's pretty commonly used for to help relax muscles. My understanding is, muscles come back at different times so some have responded quicker than others and may be overcompensating for the opposing muscle. Jake has been really tight in his hamstring which has made it hard to fully straighten his knee when he walks. On his arm, we were noticing that his arm was often flexed upward and his hand was constantly in a fist. It took a lot of effort for him to try and keep his arm down and fist open. It was also hard to pick things up with his left hand since his arm naturally wanted to rotate out so his forearm was up. His doctor targeted three main areas of the arm: finger flexors to make it easier to keep his hand open; arm extension so he could fully extend his arm down; and inward rotation so it would be easier to turn his arm over and have his palm down. (Those are all my terms, not the proper names for all this!) We've been anxious to see how the botox would help since they said we wouldn't see much for at least 3-5 days and would see the peak effects between 10-14 days.

We're now at day 10 and definitely are noticing an improvement. His leg is not nearly as tight and he's able to straighten his knee when he walks. His arm has also really relaxed. The plan is to combine the botox treatments with his therapy to really maximize the results. He is now working with two different Physical Therapists, one who has a lot of neurological background and one who specializes in the foot. Same thing for his Occupational Therapists, one is a hand specialist and one who is more general. We've also stepped up his home therapy sessions. I can't imagine how hard all these exercises are for him, but he rarely complains and just keeps plugging away.

IEP and Longer School Days

Busy, busy week! Somehow it seems like our appointments keep getting all lumped together which leads to some crazy schedules. One of the big happenings this week was Jake's IEP (Individualized Education Program) meeting.

With Jake's return to school post-aneurysm, he has needed some extra support in the classroom. It was recommended by several specialists at the hospital that he be evaluated for an IEP in order to get the services he needs. Basically, an IEP outlines the delivery of special education support and services for a student with a disability. Accepting the label of "disabled" for a kid who five months ago was a "normal" kid has not been easy for us, it's all still very new. However, we have come to accept that while Jake is recovering, he needs accommodations/extra help at school and this is the best way to go about it.

Having never been involved with this aspect of the school, it's been a bit overwhelming trying to get up to speed on everything. There was a lot of testing that had to be done on the part of the school's special ed team (OT, PT, school Psychologist, Speech and Special Ed teacher) to determine a starting point so goals could be set and measured. Logically we know he's already made amazing strides during the past four and a half months but still has a long way to go to get back to where he was before the aneurysm. But it can be hard to hear the results of some of the reports that talk about his current deficits and it brings up a lot of emotion when you see things in black and white. What makes Jake's situation a bit different is the fact he is constantly changing as he recovers (which is a good thing!) and it makes determining his ongoing needs a challenge. They've already seen progress in him during the two months he's been back at school and we all know he will look like a completely different kid by the end of the school year. Todd and I left the meeting completely drained but thankful we have so many people in Jake's corner working to help him recover.

One of the things we've realized the past few weeks and was reinforced in the meeting was how important socialization is for Jake. He's still a 10 year old boy, misses doing things with his friends and needs some normal interaction for his emotional/mental health. Even though it had been a long week, he stayed at school on Friday for recess, lunch and his fall party. It was the longest he'd been at school and while he was tired due to all the activity, he had a really good time. After fall break, he'll start going to school for four hours every day, will be there for lunch, recess and more small group work in the classroom. We all think it will be a really good change for him and he is really excited. It will also pose some new challenges with mobility in the lunch room and on the playground, but the only way he can figure out how to deal with them is to face them head on.

It's Been a Good Week

It's been another busy week at the Morgan household, but one of the better ones we've had in awhile. Jake had a couple of really cool things happen this week that I think helped him see the progress he is making.

The first was on Wednesday. We had an appointment that morning and were a little late getting to school, so I took him straight to his gym class. They were getting ready to start climbing on the rock wall, so I stayed to watch. Both the boys were on the climbing team at Lifetime Fitness for about a year and a half prior to Jake's aneurysm and really loved it. I had heard about some of the adaptive pieces the gym teacher had put up and was excited to see how it was going. When I saw Jake actually climbing, I got really emotional. No, he wasn't going as fast as the other kids, and yes, he needed some help, but he was moving his way across the wall. And he was working so hard with his left hand and was able to grab some of the regular holds. It was really, really cool to see and I took some video: http://youtu.be/auQf8ycayo4

Friday was Muffins with Mom at the school and I got to go to Music class with Jake. (It was also mustache day and I had a hard time taking either of them serious with their huge mustaches.) They were learning some Greek dances which would have been a bit tough for him right now with the footwork, so his music teacher had him tap the big base drums to the beat of the music. It gave him the opportunity to participate with the class and he was able to play the drums. His teacher also gave him some great suggestions on clapping techniques that would incorporate his left hand.

The third thing happened today while we were at my parents house. I was going over some stuff with my mom when Jake comes in and says "I was just jumping on the trampoline." I couldn't believe it! I'd been wondering when he was going to be able to jump again since it's something he and Luke love to do together at their house. I went outside with them so he could show me, and he was having so much fun, smiling and laughing. It was great to see. They even got in a few rounds of crack the egg (a trampoline game they used to play all the time). And the best part of it was, when he fell it was no big deal, that's what happens on a trampoline. I got some video of that as well: :-) http://youtu.be/Mzy5jyVdeFI

My post tonight would not be complete without talking about the fundraiser yesterday.

Mackenzie and Abbie (left and center) were in Jake's class last year and the two of them along with Mackenzie's sister Taylor (right) have been making and selling rubberband bracelets for over a month to raise money for Jake. I was so happy we were able to go hang out with them for a little while during their sale yesterday. They really are amazing girls. The time and money they (and their parents) have invested to do this for Jake is really remarkable. Thank you to everyone who came to support their efforts for him. In the past month, they have raised just over $600 which is pretty incredible. Words can't express our gratitude for what they've done and how impressed we are with their compassion. Just another reminder of how blessed we are to live in this community with such caring and supportive people.

Fundraiser - New Time

Hi all - I just found out that they had to move the time of the fundraiser tomorrow. It's now from 12:30 - 3:30, still at Tallyn's Reach Library. We'll be there from 12:30 until about 1:45. Thanks!

Fundraiser on Saturday

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.

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.