After last weekend, I started the week already emotionally drained and it continued half way into the week. I cried more off and on Monday and Tuesday than I have in awhile. I also decided later in the week that it's ok, and I'm going to stop beating myself up over not always being able to hold it together.
We started off Monday with Jake being fit for a new leg brace that he will use to sleep in. When he has his brace off, his toes drop and his foot turns inward which may be contributing to some of the tightness in his foot and ankle. So the idea behind the sleep split is to keep his foot/ankle properly aligned and at more of a 90 degree angle. I hate that it feels like so many forces are working against him walking better. Tightness in the hamstring, calf and foot; his ankle muscles being very slow to come back; him not trusting his left leg enough to put full weight on it; and some issues he's having keeping his hips straight. So we keep doing what we can to try and help make things better.
On Tuesday morning Todd and I went to meet with the middle school about next year. You may be wondering why we are thinking about middle school now when it's several months away, and the easy answer is we have to. We've spent a lot of time talking about what would be the best thing for Jake next year. If we are going to try and send him to any school other than the one he is slotted to go to, we have to turn in the paperwork by Feb 1st. Thinking about the transition to middle school has had me in knots for months. There are so many things to take into consideration...What is best for him academically? What is best for him socially/emotionally? What kind of services does the school offer to support him? I've been spending a lot of time looking at schools and thought I had found the perfect one for him. It's geared towards kids with learning differences, class are very small and lessons are geared to how each student learns best. It was about a 1/2 hour away, but I was really excited to go and visit...until I found out the cost. It's more than our mortgage. I just about died, as much as I would love to factor that in as an option, it's just not within our means. So we decided we needed to at least talk to the middle school before ruling it out. It was a good meeting and we got reassurances about many of our concerns. After a lot of prayer and conversation, we've decided that for now, it's probably best for him to go there, especially emotionally. The school may be bigger and there may be 350 kids in his grade instead of the current 110, but at least he'll recognize some of those faces in hall and in his classes and they all know what has happened to him.Putting him in a situation where it's a new school, staff and he doesn't know a soul, is probably not the best thing for him right now.
About an hour after getting home from that meeting, I took Luke to his Psychologist and that was another time for tears. I sit in on the first part of his appointment and we talk about anything that has come up. As I mentioned last week, Luke had a rough weekend and we talked about that with her. Sharing his struggles and questions of his importance to us is definitely emotional. He had a really good session and left feeling better about things.
An hour and a half later, Jake had OT. Crazy day for appointments! He was working so hard and was so focused. He hasn't got a lot of wrist movement back, especially the "drumming" or up and down action. His OT said it's a really hard muscle/movement to come back and it may or may not happen. He should be able to drum, but the movement may have to come from his elbow instead of his wrist. Time will tell.
Thursday afternoon was a second round of botox for his arm, hamstring, calf and foot. It wears off after about three months and he's been getting tighter again. We're hopeful this round will help him and are going to really hit therapy hard the next few months.
We had a nice relaxing weekend and the boys had some good quality time together. Luke has been learning magic tricks on YouTube, entertaining us and teaching some of them to Jake. Jake's been busy making Bronco colored rubber band bracelets for everyone in the family in preparation for the Super bowl next weekend. Both boys (and Todd and I of course) are really excited for the game. Go Broncos!
Sunday, January 26, 2014
Sunday, January 19, 2014
Riding the School Bus
I don't think there is anything worse as a parent than seeing your child in pain or struggling, physical or emotional, and not being able to fix it. We've had primarily emotional pains this week and with both boys. It's times like these I feel completely inept as a parent. I know a big part of our job as parents is to teach our kids how to deal with issues themselves and not jump in "fix" things for them but in the moment, it doesn't make it any easier.
Getting Jake to do his home therapy has been getting harder recently and he totally broke down during our session yesterday. He doesn't feel like anything he is doing is working or helping and he just wants to be a normal kid. As an 11 year old, he doesn't have the ability to look at things objectively and see how far he's come, he just sees all the things he can't do. And the thing is, I totally get his frustration. Todd and I talked to him about specific things that he's doing better and offered to show him older video of where he was, but it really doesn't help. He is becoming more aware of his limitations and it's just tough on him. Today, a bunch of kids were out playing in the culd-a-sac, riding bikes and running around. I could see on Jake's face he wasn't doing well so I went and asked him to run some errands with me. We were barely up the driveway when he broke down and said he felt like an outsider and just wants to be able to ride his bike like the other kids. Hard stuff to deal with.
Add to all this, we also have another child who is dealing with his own issues. Some having to do with Jake and some because he's 9. A lot of it is the normal stuff all of our kids go through at one time or another and have to learn how to deal with. There is a whole other layer that is directly related to his feeling about his place and importance in the family. Those are the ones I have the hardest time dealing with. I feel his pain and as much as I try to reassure him, it breaks my heart that he is having those feelings. I am very grateful that he comes to us instead of keeping them all inside, I just wish he wasn't in a situation where he questions his importance in the family.
On a positive note, Jake accomplished a big personal goal this week...he started riding the bus to school a few days a week. We've had access to the special-ed bus since Jake went back to school due to his mobility issues, but haven't utilized it. For Jake, riding the bus wasn't about transportation to school, it was about doing something he used to do every day and with his friends. Since it's the general bus, we had to get to a point where he could get on and off the bus on his own, parents and school staff aren't allowed on to assist. He was able to practice on a bus before winter break and everyone decided he was good to go.
To add to my stress, it was snowing Tuesday morning so the sidewalks were a little slick, but I wasn't about to tell Jake he had to wait another day. He was so excited and handled it like a champ. As I watched the bus pull away, I was taken back to his first day of kindergarten and had to fight to hold it together. There were so many similarities, his excitement (except he wasn't physically jumping around like he did at five), the independence, and another little bit of me letting go. All signs of progress for him.
And definitely noteworthy today - Yea Broncos! So excited they are in the Superbowl!
Getting Jake to do his home therapy has been getting harder recently and he totally broke down during our session yesterday. He doesn't feel like anything he is doing is working or helping and he just wants to be a normal kid. As an 11 year old, he doesn't have the ability to look at things objectively and see how far he's come, he just sees all the things he can't do. And the thing is, I totally get his frustration. Todd and I talked to him about specific things that he's doing better and offered to show him older video of where he was, but it really doesn't help. He is becoming more aware of his limitations and it's just tough on him. Today, a bunch of kids were out playing in the culd-a-sac, riding bikes and running around. I could see on Jake's face he wasn't doing well so I went and asked him to run some errands with me. We were barely up the driveway when he broke down and said he felt like an outsider and just wants to be able to ride his bike like the other kids. Hard stuff to deal with.
Add to all this, we also have another child who is dealing with his own issues. Some having to do with Jake and some because he's 9. A lot of it is the normal stuff all of our kids go through at one time or another and have to learn how to deal with. There is a whole other layer that is directly related to his feeling about his place and importance in the family. Those are the ones I have the hardest time dealing with. I feel his pain and as much as I try to reassure him, it breaks my heart that he is having those feelings. I am very grateful that he comes to us instead of keeping them all inside, I just wish he wasn't in a situation where he questions his importance in the family.
To add to my stress, it was snowing Tuesday morning so the sidewalks were a little slick, but I wasn't about to tell Jake he had to wait another day. He was so excited and handled it like a champ. As I watched the bus pull away, I was taken back to his first day of kindergarten and had to fight to hold it together. There were so many similarities, his excitement (except he wasn't physically jumping around like he did at five), the independence, and another little bit of me letting go. All signs of progress for him.
And definitely noteworthy today - Yea Broncos! So excited they are in the Superbowl!
Sunday, January 12, 2014
Hippotherapy and Percussion
What a week! Transitioning the kids back to school after a break always makes for a long week. Add to that longer school days for Jake and a few extra activities made us all very happy to see the weekend.
Jake started hippotherapy (horse riding therapy) this past Monday. I've read so much about how it can help with many areas of recovery and was so excited to get a call in December that Praying Hands Ranch had an opening starting in January. It helps with bilateral strength and muscle tone, can improve neurological function as well as sensory processing. I was also interested to find out a horses gait is most like a humans and can help the rider feel the natural rhythm of walking and arm swing. But most important, it's fun. Jake has never had an opportunity to ride a horse before and was a little nervous on the way there. We met his OT and the team that leads the horse and walks along side to keep him safe and then met his horse for the day. A red horse, named Blue, he got quite a kick out of that. 
I was so proud watching him during his session. He did everything that was asked of him...riding forward, backward, sideways, doing push-ups while riding...he was such a trooper. His OT commented she hadn't seen anyone be so willing to try so many different things their first time out. I told her that is just who Jake is, he has a great attitude. The best part of the whole thing was on the way out the car when he said how much fun he had and couldn't wait to come back. He didn't even realize what an intense OT/PT session he had just had.
Jake started hippotherapy (horse riding therapy) this past Monday. I've read so much about how it can help with many areas of recovery and was so excited to get a call in December that Praying Hands Ranch had an opening starting in January. It helps with bilateral strength and muscle tone, can improve neurological function as well as sensory processing. I was also interested to find out a horses gait is most like a humans and can help the rider feel the natural rhythm of walking and arm swing. But most important, it's fun. Jake has never had an opportunity to ride a horse before and was a little nervous on the way there. We met his OT and the team that leads the horse and walks along side to keep him safe and then met his horse for the day. A red horse, named Blue, he got quite a kick out of that. 
I was so proud watching him during his session. He did everything that was asked of him...riding forward, backward, sideways, doing push-ups while riding...he was such a trooper. His OT commented she hadn't seen anyone be so willing to try so many different things their first time out. I told her that is just who Jake is, he has a great attitude. The best part of the whole thing was on the way out the car when he said how much fun he had and couldn't wait to come back. He didn't even realize what an intense OT/PT session he had just had.
The other fun thing that Jake got to do last week was start the Percussion Group at school. Last Spring, he was in the Percussion Group that the music teacher (Mr. C) offered after school and loved it. He really wanted to do it again this year and Mr. C wanted him to participate at well. Thursday was his first 5 1/2 hour day at school, then he stayed an extra hour for percussion. I was a little concerned about his long day but Jake was beaming when I picked him up. He was so happy to be in the group again and Mr. C said that on the parts where Jake couldn't keep up, he just adapted and it worked with the the music. Jake even practiced his piece over the weekend without being reminded. :-)
All in all it was a good week and we were happy to find some ways for Jake to get therapy that were also fun.
Sunday, January 5, 2014
Back to Reality
I didn't realize how nice our week off from appointments was last week until we jumped back in with both feet this week. I also didn't realize I had taken a much needed mental break of thinking about what we can do to help Jake's recovery.
Monday he had OT/PT back to back and all those issues were still there waiting for us. Watching him work so hard to do what should be second nature really hit me hard. While the myobloc helped relax his foot and his walking is back to where it was about a month ago, his foot is still really tight and he has to work so hard to get his foot flat. The stretching therapy he's been doing has been helping his overall range of motion, which is definitely progress. We also started acupuncture this week to see if that will help. I've been doing a lot of reading about the benefits for stroke patients and found someone who has experience from the rehab perspective. Jake was a bit apprehensive at first, but once he saw how small the needles are and realized it didn't hurt, he was a trooper. He even asked me to take pictures so he could show Luke (who is not at all good with needles).
We feel like we have a fairly small window of time to maximize his recovery so we're trying anything we can that may help. The tough thing is finding the balance for him between therapy, appointments and having a normal life.
Monday he had OT/PT back to back and all those issues were still there waiting for us. Watching him work so hard to do what should be second nature really hit me hard. While the myobloc helped relax his foot and his walking is back to where it was about a month ago, his foot is still really tight and he has to work so hard to get his foot flat. The stretching therapy he's been doing has been helping his overall range of motion, which is definitely progress. We also started acupuncture this week to see if that will help. I've been doing a lot of reading about the benefits for stroke patients and found someone who has experience from the rehab perspective. Jake was a bit apprehensive at first, but once he saw how small the needles are and realized it didn't hurt, he was a trooper. He even asked me to take pictures so he could show Luke (who is not at all good with needles).
We feel like we have a fairly small window of time to maximize his recovery so we're trying anything we can that may help. The tough thing is finding the balance for him between therapy, appointments and having a normal life.
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