I decided I was tired of them never taking us seriously, because dear little Tristan always behaves like a gem at the doctor's office. They look at us like we are crazy, there is absolutely nothing wrong with this kid! I talked to Shelly about it at his 9 month appointment, and she helped me to realize that the best way to get things done is to be persistent. If I wanted Tristan to get treated, I needed to be more persistent. Even though I thought I already had been, I realized when I actually went to his appointments, I would just agree with the doctors and downplay what was going on for fear of being an obnoxious mother or being offensive. Bad Sara. A child's best advocate is their parents. I needed to say something. This has gone on six months tooo long.
I ended up taking a bunch of pictures of Tristan at his 'best'. I'd get a good shot when he was playing with his table, sitting on the floor, watching a show with daddy. Always he was hanging his head on his shoulder. And whenever we would try to stretch him back to an upright position, he would fight and scream. That muscle is just too tight, he needs more help than just watching it. Originally, Nick and I had wanted to see about getting him botox treatment. We had read about it in some torticollis literature and it seemed like the best option for such a tight tumored muscle. The idea is to paralyze the muscle just enough to allow the weak muscle on the other side of the neck to build strength.
Of course I already told you about the fiasco of a work up we had for them to tell us he didn't need botox. Mad me a tiny bit angry that I had said all along the problem wasn't his vision, wasn't his hearing, wasn't his balance, wasn't any of that. He just had a tight muscle and it was impeding his ability to sit up straight, stand straight, and crawl. This time they were going to listen. So, we called and rescheduled for a sooner appointment and brought the pictures. I showed Tristan's doctor, and she immediately said "oh, he needs botox". Nice....
I had a couple of other questions. First, Tristan still has his tongue thrust reflex. You touch his lip and blaaaah! out pops his tongue. So I was wondering if maybe the tongue thrust was pointing to his problem with textures (he won't eat anything coarse or mealy, gags it right out). Second, he likes to hit himself. He will grab a toy and smack himself in the head, or if he doesn't have a toy handy, he'll just smack with his hand. Especially when he is breastfeeding. It's a little strange. And his not being able to hold his head up while on his knees clearly has to do with his weak muscle. The doctor seemed to think a moment, before saying "well, just watch it for now". I stared at her. "To what end?" I answered. She gave me a puzzled look. I rephrased, "how long do I just watch him before something is actually a problem?" She said "well, it's not a problem now". Hmmm, completely missed my question. So what does it really mean when a doctor tells you to just watch it?? That they don't really know what's going on and we'll see what happens later? Not that any ailment has ever been cured by simple observation......
Well, in the mean time, we did get what we wanted. Tristan will be getting botox in a few weeks. He is also going to be seeing another physical therapist in Sandy to see if maybe she can determine if he has a sensory problem or not. I just don't want to feel like I haven't done everything in my power to help Tristan grow and develop like a normal baby. It breaks my heart to see him smash his face into the carpet everytime he tries to crawl, or to fall over after just a minute of standing, or to turn red and gag up everything except bananas and sweet potatoes. I just want him to be able to do things other babies do. In only 2 months he will be a year old, and I would love it if he could hold my hand and walk beside me soon after that. We're working on it, maybe it won't happen exactly when I want, but it will happen.
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