It's been an interesting week to say the least. Jake started out walking so well and was so excited to get back to school on Monday. He's getting really close to being in school full days with the exception of a few appointments/therapies here and there. It's crazy to look back to August and September when he only had the stamina to go about 3 hours a day. He's really make huge strides in this part of his recovery.
Monday was a good day and several people noticed and commented how well he was walking. After the casting and how well he did last week in Mexico, I really felt he had turned a corner. On Tuesday when I picked him up from school, I noticed that his walking was a little more labored and figured he must have just been a little tired. He had PT on Wednesday morning and the entire session was used to work on his walking. He seemed to be doing a little better when we left, but on Wednesday afternoon I got a call from the school. They told me his walking had really deteriorated and they wanted him to ride the adaptive bike for the rest of the day due to his safety and fatigue. I couldn't believe what bad shape he was in when I picked him up from the bus. He was back to the step with the left, hop forward with the right. We were at a complete loss as to what was going on. Several theories were being tossed around. Was it the lower altitude being at sea level that made he walk so much better? Was is the fact that we were on vacation and his brain wasn't being as taxed? Was it just being in a different environment where he didn't think about it? We really don't know why he has regressed again and that is what is so hard. He's had so many rounds of improving then regressing, you would think I would be better prepared but I'm not. And this particular time, Jake is painfully aware of the difference. He's asked several times this week, "Mom, what happened to my walk? Why can't I walk like I did in Mexico?" It breaks my heart to tell him I don't know. We're trying really hard not to make a big deal about it so he doesn't get obsessed about it and thing about it too much. We did tell him he knows what that felt like and he knows his body is capable of it and that's a good thing.
He had PT again on Friday and I talked to her about all my different theories. She has heard similar stories from other patients when going to a lower altitude (four different people I talked to this week said the same thing). She also said it's possible that he's using his brain so much more now that he's home he's just more fatigued. Bottom line, she doesn't know why either. He did a great job on his exercises and all the mechanics are there, so it really makes no sense. She sent him home with an arm crutch which is helping him get a more even stride and allowing him to get around better on his own. However, watching him over the weekend, we're concerned he's leaning to heavily on it which is causing him to lean more to the right when he walks, so he's putting even less weight on the left leg.
We're really hoping and praying things continue to improve this week and we'll just keep taking it one day at a time.
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