Anytime Macayla changes, it is unclear if it is a permanent change or temporary. Sometimes she loses some ability only to gain it back later, or she may never recover it. Macayla has essentially stopped talking. She will make some sounds that could be versions of words, but the vocab has disappeared. She stopped interacting with objects and toys over the holidays. She started rocking back and forth in her wheelchair. She has also started some strange contorting in her chair where she turns her head and trunk as far as she can to the right. It is always to the right. We are not sure if this is seizure related or not. It became more difficult to interact personally with Macayla as well. She may get back into the groove but it is hard to know.
She has stopped eating by mouth completely. We think this is probably a permanent change now. So, she gets all of her nourishment through the tube.
Today, I was able to get her excited about pouring water from one cup to another. This has always been one of her favorite things to do. She loves the sound of it and watching the water cascade from one cup to the other. She started smiling and grabbing the cups and she started interacting with us pretty well. I did notice that she seemed to have difficulty focusing on the cups. If her eyesight is giving her trouble, then this may account for her lack of interest in playing with objects. But that is IF her eyes are giving her trouble. The last eye check was good. The brain is such a mystery. It is always hard to know with Macayla if it is the disease, the medications, or if it's just a five-year-old thing that makes her change.
No comments:
Post a Comment