Today was a terrible day for Miss Belle. During her physical therapy, an orthotist came by to measure her orthotics and stretch her calf and ankles. He was looking for symmetrical range of motion. Of course, Adeline screamed because she hates being manipulated. It is really hard to get a good feel for her range because she fights it so much. The conclusion was that she is tighter on one side. According to her PT, it is slight but the orthotist seemed to think it was significant.
He is a really nice guy but he really needs to watch his delivery. After stretching her he asks, "What is the diagnosis?" I just want to scream - THERE IS NO DIAGNOSIS!!! Do people not get there she can be delayed without a syndrome or a condition? It told him she was a preemie and he said, "That's it?" I am sitting there wondering, does she really look that bad? Does she stand out like a sore thumb? We don't get "the look" from people in public (at least not any more because there isn't a cannula taped to her face). How does someone who doesn't know her presume that there is no chance of normal?
The orthotist made the recommendation that we start stretching her at night in order to loosen her up. Thus, she will wear braces that go up to her knees and hold her ankles static (most preferable beyond 90 degrees). Joy oh joy. She is really going to like this! What is even better is that he had to cast each of her legs to fit her for the braces. Well, as you can imagine, having a cast put on her legs while they are bent in an uncomfortable position (let's not even go into the sensory component) made her irate. She was crying so hard that he she wasn't keeping her sats. It was beyond anything I have experienced in some time. I was the lucky one holding her in my lap. It was truly miserable and brought me right back to the NICU and past hospitalizations. There have been so many times where I have held her down for terrifying and painful procedures. It was much easier when she was little (never easy but not nearly as hard as today) because I didn't see the shear terror in her eyes piercing my own.
It is times like this that I want to scoop her up and run away. Enough is enough. It seems like positive yardage always presents us with a new problem. For example, she is walking very well now and able to use both legs with symmetry. It took a long time for her to accomplish this. Shouldn't this mean the intervention backs down? Not in Adeline's case. Because with walking behind us we are now focused on tone and her latest trick, toe walking. We always seem to ramp it up. Here we go gain. New orthotics during the day and stretching braces at night. When will it end for my sweet girl?
This miserable hour during our morning set the tone for the rest of the day. She has been quite miserable for the past couple of days (most likley the result of a flu shot) so this morning was like a double does of hysterics. We went to Hippotherapy tonight and had to cut it short because she was a blubbering mess. It is the first time I have every seen her come running to me in tears. Usually, she finds her bunny and waits for me to come to her. She was so upset when she turned the corner and saw me waiting for her. I hope this doesn't screw up Hippotheraphy. Once something rubs her the wrong way, it takes a long time to get her going on it again.
