I should have written an update a while ago about Luella's appointment with the neuropsychologist. Things have been busy with school wrapping up for the kids (they will be done this Thursday!) and Jim gone again for work last week. I'll start out by letting you know that Luella has had three seizures since my last post. I was blogging after every seizure but since she seems to be having about a seizure a week - I don't always have time. Then, what do I say, but that she had another seizure? So you probably won't hear about EVERY seizure... just when I feel like there is something more to share.
Luella's seizure a week ago shows just how important it is that someone is ALWAYS watching her. She had been playing around Jim and the kids in the living room then went to the playroom to play. I was in the kitchen (just the next room over), but was making supper and couldn't be in the same room with her. I was talking with her a little bit to know that she was okay. I asked Jim if he could keep an eye on her since I couldn't be in there. I asked Luella if she was okay - something I ask her several times a day - and she replied "yes, I'm okay". She was quiet again for a few seconds (maybe 30 seconds total) before Jim got there. When he went in the room she was laying face down in the blocks having a seizure! This is my biggest fear and why I feel like I can't leave her for even just a few minutes. I have to be able to hear her talking, singing or playing to leave her - and then I'm still very close by. Seizures get harder to stop if they are allowed to go too long. I did not hear a crash so she must have went down slowly. And thankfully I know it hadn't been more than 30 seconds before Jim found her seizing. She got her meds right away and the seizure stopped. It just drives home the point that she can not be alone.
Backing up to a couple weeks ago when Luella met with the neuropsychologist... The day went well despite Luella have a seizure the night before! We got up EARLY! Thankfully Luella did sleep a bit on the way. We had most of the day allotted for testing but Luella did so great - she got her testing done in the morning and we spent a little bit of the afternoon talking with the doctor. Luella's testing gave her an IQ of 94 (the normal range is 90 - 109) and showed her academically at a four year old age level (she is currently 3 1/2). Those results were great! It was very apparent during the testing that Luella is QUITE active. She could not sit still and it was hard at times to get her to focus. The doctor feels that Luella does have ADHD. Normally a doctor would not recommend medicating such a young child with ADHD but she feels that Luella would benefit from calming her brain to make it easier for her to learn and function. We'll be seeing Luella's neurologist in July and talking with her about the possibility of ADHD meds then.
We appreciate your continued prayers for Luella. We wish we could say no news is good news going forward, but I just don't have time to write about every seizure. Please pray for Luella and all those with Dravet Syndrome. We pray for healing, a cure or a more effective treatment! Thank you.