One thing I didn't mention yesterday...I noticed while we were sitting in the ER that my throat was hurting. I have horrible allergies year round so it's always hard for me to distinguish between allergies and actually getting sick. But a sore throat is usually not a good thing and I've been quite congested today. Now that I think about it, Reagan has been a little stuffy the last few days too. So I'm wondering...is Reagan getting sick? Because that's a big trigger for seizures and could possibly explain why we saw 2 tonics yesterday. I don't know. It's all such a guessing game. What's causing the seizures? How do we stop them? No one knows. It's basically just trial and error...each kid ends up being guinea pig. It's insane! And so frustrating. Reagan's been in quite the mood today. Fussing all day as well as bouts of screaming (like she's in pain). We gave her the clonazepam 3x today and thank God no more tonics.
We had an appt at 8am this morning to get Reagan fitted for her AFOs. They put them on and made a few adjustments and we were off. We'll gradually increase the amount of time that she wears them. She wore them for an hour this morning and then an hour tonight. Tomorrow we'll increase it to two hours and so on. The guy that did the fitting basically said that we'll continue increasing the time until she's wearing them all waking hours...but when I asked her PT about it she said that Reagan probably only needed to wear them 6-8hrs a day to get the full benefit. I guess I'll need to follow up on that. She also got measured for some elbow splints because she tends to keep her elbows bent and her arms tensed up and also some hand splints that fit over her hand like a little glove and keep her fingers and thumb out so she won't keep them in a fist, like she tends to do. These aren't things that she'll wear all the time...just off and on to help her break these bad habits! Mike was joking that she's going to be bionic once we get through with her...the 6 million dollar baby!