Let me preface this by saying this week has made me tired. It is Friday morning, and this week I have talked to the pediatrician on the phone twice, and emailed her four times. I am so tired of it, I can't help but think she is probably a bit tired of it, too. I feel like I talk about these things ad nauseum and I really wish I was writing about something else, anything else. But I I have too much grumbling around inside me and I have to put words to it, so I can put it away.
Tuesday we had a private speech therapy evaluation. It went really well. The therapist was really nice and is excited to start working with KayTar. She wants her twice a week, whereas through the state she only qualifies for once a month. She was able to get KayTar to close her lips around a straw! First time ever! The private OT and ST are going to work together to really work intensively on her oromotor skills, maybe one day we will be able to give up the bottle!
But, while we were in the one hour evaluation, a couple of odd things happened.
First, she noticed KayTar doing a strange blinking thing. Now, we've noticed it for about a week. It just looks like excessive blinking, and the blinks last longer than a typical blink, kind of like a squeeze...but we hadn't seen it enough to know if it was weird or not, if that even makes sense. Well, during the one hour we were there, it probably happened upwards of 20 times. And if it caused the ST to ask me about it, it is probably out of the ordinary.
Second, the ST noticed her tensing her shoulders, like a shrug, in a way that seemed involuntary. She kept count of the times it happened, because it struck her as odd. She also said when it happened she went a little pale. During the hour, it happened about five times. I've never seen KayTar do this one before. I'm assuming both of these things were triggered by stress. We've seen the blinking before, as I said, but to give you an idea I only saw it four times throughout the entire day outside of the evaluation. For it to happen upwards of 20 times within an hour is excessive. We were with a new therapist in a new room and stress is the only reason I can think of behind it.
I don't know what the hell is going on, really. All these things, even outside of the episodes, the drop attacks, the eye deviations, now the blinking and the shrugging...what is going on? Is it seizure? At this point, I really do feel like the Girl Who Cried Seizure. I just want to shut up about it. But even assuming none of it is seizure, what is it? Why is it happening? Is it muscle spasms brought on by stress? Motor tics? Does it even matter what it is? Is it doing any good to keep documenting it all? Or am I just making it harder on myself? Does it do any good to keep updating the pediatrician when these new things happen? Or am I just pestering her? They can only do so much, and they are probably doing most of it already.
Things are good. So good. She is thriving! I just want be able to focus on that and leave everything else behind. But I can't. Because several times a day when I'm looking at her beautiful face, her eyes dart away of their own accord and I can't not notice it. Or like yesterday, when I asked her for a high five she raised her hand and started moving it towards mine and her eyes danced away. She froze, her hand suspended, still halfway between us. Then her eyes came back a few seconds later and she completed the motion she had already begun. I can't not see something like that. Or when she noticed her brother wasn't here yesterday and she got upset her eyes began to blink and squeeze, blink and squeeze. I notice. I can't pretend I don't. Or when she goes into one of those horrid episodes and she just isn't there anymore, she just isn't fully herself for such a long period of time. I can't just let it go like it isn't happening. I want to know why it is happening, all of it.
I know others notice. They ask me about it, just like the therapist did. My parents and in-laws do the same. After I've noticed a quirk for a few days, I'll casually mention it to Josh, and he always reaffirms what I've noticed. But it FEELS like I'm the only one who notices, and I can't explain that feeling. I feel like if I just shut my eyes, it would go away. Or if I stopped talking about it, there would be nothing more that needed to be said. But that isn't the truth and I know it. It just feels so true right now, and all I want is to close my eyes for a little while...but I just can't take my eyes off this face.