been a long time since i've updated. kaiya has been going back and forth with a cold. she coughed up a big chunk of mucous the other day and i haven't heard her cough since so hopefully she's done with it. we had to go to the doc to get her ears cleaned and we got an order for an eeg at the same time. kaiya has been doing something new that has me worried she is starting to have seizures. when i wake her up in the morning she looks like she startles - her arms fly up and her legs shoot out. sometimes it lasts less than a second, and one time it lasted about 10 seconds. she doesn't stop breathing, she doesn't change color, she still seems to respond to stimuli (if i go to wipe her face she flinches just like usual) so i don't know if it's a seizure or if she's doing something else...although i don't know what else it could be. and it only happens when i've woken her up. if she wakes up on her own i don't see it...very odd.
other than that weird stuff she has been doing well. she's gaining weight, getting taller, charming the heck out of her teachers. i'm trying to teach her how to say mom. so far she just says "mmmmmmm", but at least it's a start. very occasionally she slips and says something that sounds like mom, and then we celebrate....but mostly it's just mmmmmmmmm in varying lengths and volume.
we are preparing for halloween. kaiya usually has pretty crazy costumes, but we don't have anywhere to go this year so she's taking it easy and being an elf - her wheelchair will be transformed into a mushroom so she can be an elf sitting on a mushroom.
please send out some warm thoughts that this weird behavior is either not seizures...or something easily managed.