Oh boy, what fun - Casey got to experirence his first bite of food today! He's 6 months old this week and it's about time! So here you go - I chose sweet potatoes! He has little red spots on his cheeks because we're battling eczema in case it looks funny.
We made it through a bit of sweet potatoes and finished up with the all time gold standard for first foods - rice cereal!
Good job, Casey! We'll stick with sweet taters for a few days then move on to peas!
Casey also got to meet a famiily friend for the first time this week - Kristin! She started out as my massage therapist in Battle Ground but quickly turned into a dear friend. And she also spent lots of time watching Cody back then. I told her that she actually knew Cody on a daily basis back when he was "normal" - those first 6 months of his life. Makes her all the more special. She stayed for a few days - gave me a fantastic massage right at the dinner table! She did the dishes, watched both boys off and on, and generally brightened up our lives. It took Cody about 30 seconds to re-bond with her as you can see by the fact that he's asleep on her shoulder. And Casey claimed her as his first girlfriend! Thanks, Kristin for spoiling me and serving my family. You are one of the most kind-hearted people I know!!! It takes a brave person to take on this crazy crew!
Cody made it successfully through his first day "alone" at school! I went with him last thurs/fri but yesterday I dropped him off. "Miss Ashley" met him at the door as usual with the little red wagon and carted him away. I didn't even sniffle! I was so glad that I didn't feel sad - I felt secure because I'd been in the classroom for 2 days. And I really like Ashley. And Cody seems to like it. So what's there to be sad about? I thought I'd bawl, but I didn't. Go figure. For once I didn't dramatize something I could have! Today he got tired toward the end of class and fell asleep in the car before we left the parking lot! But I think all that stimulation is so good for him. He goes from 8:30am - noon M, T, R & F - gets wednesday off. Then after our hospital stay next week, we'll talk about adding his afternoon autism class that meets next door.
His seizures are still "micro" right now - but he's having 20-30 a day which kind of freaks me out. Here's an email I sent to our neuro and his answer in return:
Dr. S - since Dec. 16th, Cody has only had 3 of his "big" seizures. He's had a handfull of no seizure days. But primarily he's now having 20-30 tiny "microseizures" a day that last 15 seconds or less and are just a brief, quick stiffening and then they're over. So...
1) what's worse - 3 big seizures a day, or 30 microseizures? I can't tell if we're making progress or not.
2) we're due to start our 6 days in the hospital on Jan. 14th - will you get enough of a "seizure reading" if these are so short in duration?
3) should we continue at 40/40 per day of lamictal and 18 ml trileptol?
Thanks!!
Shawna Graves
Dear Mrs. Graves:
3 big seizures would be worse than 30 microseizures. The reason would be extent of spread and duration of glutamate exposure. Yes, seizures are seizures (so the Telemetry stay will be important). Most likely, the seizures are starting from the same locations but the longer ones are the ones that are less controlled and are spreading. We don’t really care about spread for surgery possibilities, only for seizure control. Yes, until the Telemetry let’s stay put on medications, if we can.
Happy New Year! I hope your getting some sleep.
Dr. S.
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So there you go - I guess these little seizures - altho many - are better than the big ones! Hallelujah to that. Altho I have no idea what half his email was talking about - at least I got the gist - that these little ones are better than the big ones! I am dreading the next week in the hospital - and obviously my greatest prayer that Cody would be seizure free so he wouldn't have to go in - didn't get a "yes." Sigh. It's still a few days away - but we have to go in even if he has no seizures between now and then.
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