Thursday, February 17, 2011

we're still here

i was reminded awhile back that i have been neglecting akaiya's blog. i visit akaiya's friends blogs, but i haven't visited hers in awhile and's been a long time since i've written an update. life really does get in the way if you let it.

akaiya is getting fat.

it doesn't sound like a nice thing to say, but it is what it is. she has cottage cheese on her legs and multiple belly rolls. we went from rubber bands at the sides of her pants and needing slim fit jeans to wearing regular pants. everything is's a little overwhelming. i was used to her clothes lasting a year or more, now we're replacing items every couple of months. how people with typically developing children manage this i will never know!

akaiya still has seizures.

she is now on 4 medications. it's crazy to think of the amount of medicine i put into her belly each day. how can she get this much medication and still have seizures? what are they doing to her little brain? we've been dealing with this issue for about a year & a half now and i still feel like i don't really understand the how/what/where/why of the neurological part of her condition. the neurologist can't really make a prediction but he has mentioned that it may be the degenerative part of her diagnosis. try keeping a brave face on when you get that handed to you in a room full of doctors, nurses, and med students...

akaiya is a sleepy kiddo most of the time, but when she is awake she is still as charming as ever.

weird as it is, i almost think of her as two different kids. the kaiya before seizures and the kaiya after seizures. the kaiya before seizures laughed all day long. she was loud and busy. she was a tiny lil sass-a-frass that loved to interact with everyone and demanded your undivided attention at all times. she liked to be held, but not too close - she was a wiggly thing that wanted to be constantly tickled, jiggled, and bounced.

the kaiya after seizures sleeps. all the time. when she's awake she likes to snuggle. she will willingly fall asleep in my arms. she still giggles, she still loves people, she's even still sassy at times (although she's not so tiny anymore...). when she's awake she can still be loud. we don't hear it a lot anymore though. mostly i hear her snores.

i miss the kaiya before seizures.
i worry about the kaiya after seizures.