Warning: This post is going to have some whining, general irritation, and self-pity. I don’t mind if you choose not to read past this sentence. I am going to write anyway as therapy for me.
Most of you know Freckle Face’s story. There is a short recap here. Yesterday, he had a physical therapy appointment. He has been going less and less as he has improved. I will admit that he has been wearing his orthotics less because 1) they are a pain in the katookis to put on and I really want to swear when I do it and 2) they are getting too small and leave marks on his feet which is not good. In my defense, I was under the impression that we were improving and that he was not going to have to wear the orthotics on a continued basis. This was the impression I was under as his appointments for therapy were getting farther apart, even to the point of going in only once a month.
Yesterday changed all that. I am not sure who or what I am more irritated with; me for non-compliance, the physical therapist for leading me to believe that we were on the road to freedom, or things beyond my control such as nerves and tendons. (For the record, I do like the physical therapist a lot. I would never switch. I feel that we are very lucky that he takes Tricare.) So, we went in yesterday for a routine appointment. The physical therapist wasn’t there, but his assistant was. She is great, too. She hasn’t seen Freckle Face in a long time. After some work with him, she says to me, “He is really tight. Tighter than the last time that I saw him.” Crap. The physical therapist came in half way and worked with my guy. Yes, he is tight. According to the PT there are two reasons. 1. Non-compliance. (Yeah, that is me. He is nice, though, he doesn’t lecture. I feel bad enough as it is. He deosn’t need to.) and 2. A growth spurt.
I knew that a growth spurt was going to be our biggest enemy. But see, here is the problem I have. If Freckles’ issues are not neurological, then why is he getting tighter again? He shouldn’t get tighter. I was told two years ago by the physiatrist, that if this was not neurological we would do all this nonsense and in two years we would be on our merry way. Well, it has been two years, two rounds of botox, casting, and now, we are moving into our 3rd set of orthotics. He shouldn’t be going backwards.
Ugh. I don’t know what to believe anymore. Really, in the grand scheme of things this is so minor. I mean, he walks on his toes. He can get his feet down now even though he has to compensate by turning out. We have come a long way. And shoot, he is a normal boy. I really have nothing to complain about. I guess I am just tired of being told different things all the time. He has Cerebal Palsy. No, he doesn’t. He is walking great. No, he needs new orthotics. People ask me about him and what the plan is for him. I honestly don’t know, and we all know how much I love the unknown. I am this close (picture my thumb and pointer finger 1 cm away from each other) to going above all their heads and taking him to an orthopedic surgeon. That would fix it all! Nah, I can’t do that until the people with all the letters after their names make up their minds. There is a reason, but I won’t bore you with the medical nonsense.
Ok, I feel better. My guy is such a trooper. He just takes it all in stride. He loves going to therapy, so I am glad that isn’t an issue. He wears his orthotics without much complaint. It is all good. It really is a blessing that we don’t have to move. We can continue with those who know him and all that. I really have very little to complain about. So, that is that. Time to get my act together. No more whining.