Samantha has been feeling some pain and complaining of her body jerking and pulling. Her left foot is also turning in more. I spent some time last night trying to flex her ankle and foot but it was harder than usual and she grimaced some in pain. Although we do not talk about it much, I am a little worried of how her symptoms will progress. Will it affect her back? Will it affect her speech and eating like Tyler? What is the next area we will need to deal with? I just found out that the secret PAL visited the house today and brought Samantha a cool orange and blue bracelet for her first communion. She was suprised and after all of ths time we still don't really know who the PAL is.
I almost feel guilty saying "we" because my kids and others live with the pain physically and have to endure the handicaps that we do not have to. It will eat you up thinking about how dystonia affects people and you cannot help. I will do anything for my kids to make them feel better and have the same advantages as others but now I also want to do that for others. My understanding of what dystonia is and how it is seen makes me want to cure everyone today.
Tyler is doing pretty well but his grade in social studies dropped off a little and he needs to get it up before the end of the year. I believe it is because he is sitting near his buddy in school and hasn't been paying enough attention. We will see. Ty's dystonia is managed right now with his left wrist more flexible and his walking is still better. I will need to keep his legs stretched because he hardly puts any weight on his left leg. He tends to keep that leg in the air and bent.
Although we look for symptoms in Luke every day, I do not see any right now.