5-21-09

Lily had her eeg a couple of days ago. It went better than expected since they let her watch a DVD on my lap after she was hooked up (THAT part was a nightmare, poor girl's face, neck and chest are full of broken blood vessels from screaming and straining while she was held down). It was all done within a half hour. They said they got some really good pictures (whatever that means). No seizures in that time frame. The neurologist seems to think that Lily might have a sleeping disorder where she wakes up paralyzed. I'd say that's consistent with what I have seen (I've actually walked in on her screaming and seemingly unable to move, which I had then perceived as some kind of seizure). I can imagine that would scare her to hysteria and explain her behaviors, but I'm also thinking there must be something else going on, as she takes 2-3 days to recover from these episodes. From what I've read, sleep paralysis is common and supposedly doesn't do any damage. ?????

The neurologist mentioned also putting her on some seizure medication to see if the behaviors I'm seeing during the day will go away, as a way to test if those are, in fact, seizures. I have mixed feelings about that. As her mom, I'm fairly certain that she is having those during the day (though it's been more sporadic). But I've also noted that her daily seizures have usually followed a "big seizure" (which now I know is probably not one). So does this paralysis somehow neurologically trigger these seizures, and if so, if we can somehow cure this sleep disorder will it make the seizures go away?
I guess I'm getting ahead of myself. They took more blood, AGAIN (poor girl has had more blood taken from her than I think I have in my life) and I guess we'll go over the results at the next meeting in a few weeks.

Here are some of Lily's latest:

• Now Lily says "Pip, Pip, Peeyay!" for "Hip, Hip, Hooray!"
• She can say "I love you"
• Her favorite show is the 'International Super Spy' Backyardigans episode, and I've actually heard her say 'International Super Spy' (they sing words in the show, so she does too. It's easier for her to sing than for her to talk, because it's slower and gives her more time for processing), but darn that apraxia I haven't heard it again, but she does say 'super spy'.
• Lily loves "Bob Bob", which is "Sponge Bob". Not something I like to encourage (I can't stand sponge bob) but when she makes a specific request for him after I ask her what she wants to watch on tv, it's hard for me to deny her since she rarely makes such specific requests.

We had our yearly followup with Early Steps and her service coordinator said that Lily has made the most progress in this past year than she has ever seen! I know that Lily is doing wonderful and really achieving great things. Despite her struggles, she perseveres. She inspires me. Isn't it suppose to be the other way around? LOL