I want to preface this blog with a notice that I am not complaining. Things could be so much worse than they are. I realize that. I am just using this blog for two things: a kind of therapy for me..to let all this out.. and two: to educate anyone who wants to read it about the disorders my children have. Most all of the things that complicate their lives are poorly understood, even by doctors. Like any good mother would, I want answers. Answers are never found by calmly waiting around and hoping.
To update on the MRI: She has no vision loss at this time so they are just going to do MRIs and eye exams every 3 months. They say the lesions found in her brain are not the cause of her other problems. I am having a hard time excepting that. I just do not see how they cannot be related.
On Wednesday Caroline will be fitted for some braces for her feet. At this time we think that it will only be up to her ankles, but the orthopedist might decide to make them go a little higher. They will fit in her shoes. She is getting them for both feet, but the one for the left foot will be more involved. The goal of the device is to give her some stability and hold the foot upright, while still allowing her to move and try to gain more muscle control of her own. They have also diagnosed her with some mild hip dysplasia, so that together with her hypotonia makes things a little more difficult for her.
This is an example of what it might kind of look like if it is just the ankle one..they actually will cast her feet and then take the casts off and use them as a mold to make the brace.
Below are some pictures of what her legs do. She is laying down in these so you can see how they turn in. (Yes, one of her legs is slightly longer than the other) It is harder to really see when she is moving around unless you can zoom in on the legs and I do not have a video camera that will do that very well. If you were able to see her walk/run though, sometimes she does okay she just looks clumsy. Other times she falls a lot. Other times she just drags the left leg behind her. She has learned to slowly go up small steps while holding onto something, but it not able to do it while alternating feet. She puts one leg at a time on each step. (Each step has both feet on it at some point). She is not able to go down the stairs on her feet, she usually just turns around backwards and crawls down them.
This is not one of my big concerns. I have been assured that PT and OT along with the orthopedics can help her gain the muscle control she needs and walk/run properly. It is just going to take quite a bit longer for her than for her peers. Of course we are going to do everything we can to help her. I would just like some answers as to why this is happening and how to make it go away so everything is not a struggle for her. (Although you would never know she was struggling...she is the happiest kid ever.)