Thursday, November 11, 2010

hair cut

we've been trying to grow kaiya's hair out. the thought was that if it got to a certain length it might actually weigh itself down and hang nicely... this didn't seem to be working at all. her fro just kept getting bigger and bigger and crazier. she hates having her head touched, so imagine trying to comb through this big mop of curls after she's been rolling around on the floor or in her bed. not fun for either of us. so nana finally gave in and was willing to cut it. kaiya was not too pleased with the process and shook her lil head no every time we told her to sit still. such a sassy little monster!

ketogenic diet

akaiya had a check up with her neurologist the other day. my parents brought her b/c i had parent teacher conferences and couldn't take the day off of work. they had a lot of information to take in that's for sure! she is still having seizures. they seem to increase the more constipated she is - i don't know why this is. he is not happy with her continued activity and he wants to try a ketogenic diet. from the internet searches i've done it looks like the "starvation diet" works with 1/3 of all children. i have mixed feelings about this...first and foremost is the concern that she has had issues putting and keeping weight on all her life, now we're going to put her on the atkins diet and hope that we can keep it balanced enough so that she doesn't lose too much. also, this is going to take away the small amount of food we've been able to feed her by mouth. kaiya is not a willing oral eater these days, but what she is willing to eat has carbs in it. no carbs allowed...if it takes away the seizures then i'm all for it, but i'm hoping it doesn't damage something else in the process. the diet can only be started and administered by a trained dietician in a hospital. apparently these are hard to find. the university of chicago doesn't even have one. so we might have to expand our list of hospitals. kaiya is going to be familiar with all of the lovely facilities we have in our fine city at this rate. in the mean time, her dosage of keppra has been increased to try and wake her up a bit. it hasn't worked so far, but we're not at the dosage he wants her at. we have to work our way up to that.
while they were there he also decided that he wanted her to start clinical physical therapy. so now we're calling around trying to find a place that has after school spots open - which is about like finding a needle in a haystack for sure...
her g-tube site has been looking really icky lately and he agreed so he prescribed a cream for it. it worked almost immediately and her site is looking a lot better than it has.


i had major creative blockage this year when trying to figure out what akaiya was going to be for halloween. usually i start planning months in advance b/c it is one of my favorite holidays. this year i just couldn't come up with anything that really got me excited. then as i was looking thru some pictures i came across this one:
this is me when i was in kindergarten. 28 years ago. 4 years old...
well, the picture got me to thinking, how cool would it be for kaiya to be grapes just like her mom? and of course, we still have the exact costume that i wore. some things are worth keeping forever =) so here is kaiya in the same costume that her mommy wore way back when.
she didn't seem nearly as excited as we were to have her wear it...