It's a question that I am asked frequently, and I never know quite how to answer. In some ways she is doing great. We are still marveling over the miracle that the end of last year brought; vision. Now, you must understand that it's nothing like normal vision. In fact, I am not exactly sure what she does see. But we do know that it's something. Her vision seems to be inconsistent, sometimes it's there, sometimes it's not. And objects need to be quite close to her face for her to spot them. For example, if she was laying on the floor and I was sitting a few feet away, she wouldn't know I was there. But we are so grateful for the sight that she does enjoy and are hopeful that it will continue to improve.
Now, about those Infantile Spasms. They are still occurring. Not as severe as they were several months ago, but none the less, they are happening. Just last night I saw her go through a cluster of them. At this point we are a bit puzzled as to what brought them back. When we checked her levels they were in fact extremely high...so it wasn't that she was in need of a dose increase. And then there was a thought that perhaps a virus had weakened her system and allowed the spasms to occur. But that was a few weeks back and they haven't stopped yet. So it is still a mystery {that I am determined to solve}.
Elisabeth will be turning 16 months old on Saturday. Do you realize that she should be a toddler now?? {It's just that she doesn't toddle}. I can remember looking at her as a newborn and she seemed so normal. It was hard to imagine that she was going to grow up different. We had her picture taken a few nights ago {above} and it was the first time that she looked older to me. I can tell that she is leaving babyhood. I also noticed a vacant look on her face, and I realized that this is how it will be. While all the other children her age start progressing and discovering and running and climbing and eating and laughing and reading books and watching TV and playing games, Elisabeth will just be. Her body will grow but her mind will stay behind. And I've known since before she was born that it would be this way, but she is just now at the stage where I can really see it.
So that's why when people ask "how is she doing?", I don't know quite what to say. For she is 'doing' nothing that a 16 month old child should do. But she does bring me joy beyond measure. She is catching glimpses of the world. She is learning to put her lips together and go 'mmmmmammmmma' very slowly {at which point my heart melts}. She is still my miracle. She is mine.
Elisabeth at 1 week.
