Friday, June 24, 2011


kaiya came with me to do some grocery shopping today. it has been awhile since she & i did a solo trip because she's getting kind of big to sit in the shopping cart, and i can't push a cart and a stroller at the same time. but we both needed to get out of the house today so off we went to food 4 less. this store isn't the closest too us, but i like to go in there sometimes because they have some things you just can't get anywhere else. apparently this is where all the friendly people shop too. so many people stopped to tell me how pretty kaiya is, and to say hi to her. it was almost a little odd how many people approached us. but it was nice for other people to actually acknowledge the little noise maker instead of just staring out of the corner of their eyes. kaiya of course loved the attention! we might have to make that our normal store =)

Wednesday, June 15, 2011

petite to plus size

i have really got to work on posting here more often. i come and read the blogs of other kiddos and i tell myself i should update akaiya's, but somehow i always get distracted and tell myself i'll do it tomorrow. well, school is out, kaiya and i are both footloose and fancy free at the moment, and i don't have anymore excuses so here we are.

i guess the reason for not posting is that i don't really feel like much is changing.

but we have a few new things going on. we live in a different house. it's big enough to hold all of our stuff! we live with a great guy that has taken both of us into his heart. it's amazing to see a man that is not biologically connected to akaiya acting like a father. and a darn good one at that. i don't know how we found him, but he's amazing so we're definitely keeping him!!!

akaiya finally got her new wheelchair! it's AWESOME! she sits so well, and looks so comfortable in this chair. plus it's a pretty sweet lookin' ride! the seat and backrest are black where she sits, with silver snakeskin on the back. her name is stitched on the backrest in silver thread. the frame of the chair is opalescent white and the coolest part is that it GLOWS IN THE DARK! you would think that it was my chair with how excited i am about it...

as you can see, the foot rests are a little on the large side. they were supposed to have someone come out and change those out within 7-10 days. we have not heard anything yet - fairly typical...

the biggest change we've had over the past year is akaiya's size. she has doubled herself. depending on where she's being weighed, she's between 51-55 pounds. it's crazy to even think about how much she has grown. she has rolls now. and she jiggles. when i pick her up she's squishy. and VERY heavy...

the thing that hasn't changed is the frustration with her seizure condition. she is still on a lot of meds. she still has seizures. we switch meds. she still has seizures. so there is one more med that we are going to try, and then the next step will most likely be the ketogenic diet. unless another med comes up that he wants to try instead. i think her doc is nervous to put a kid that has issues with growing onto a restrictive diet.

we are VERY excited that it is almost july which means it's time for the SOFT Conference! yay! it's being held very close to where we live which is super convenient, at the hospital that akaiya stays at when she's having issues. SOFT is trying something new this year, and introducing a fundraising event called the Stroll for Hope. akaiya is doing her best to try and raise funds for the SOFT organization and would appreciate it if you wanted to visit her page!

Stroll for Hope - Akaiya's Page

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.

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...

Friday, October 29, 2010

where did my baby go?

i did something the other day i never really thought i would do.

i bought kaiya her first bra.

i know what you're thinking..."this woman must be crazy!" "isn't kaiya only 8 years old?!?!" "what is wrong with her mom???"

well, the lil person is in the early stages of puberty. and she's developing. quickly. i like to use the little cami shirts with the shelf supports...but then i was at old navy and they had these little cotton cami bras so i picked them up. i feel like they kind of flatten her and make her look a little less "curvy".

she is getting some meat on her body too. the last weigh in has her at a whopping 45 lbs. she used to be all skin and bones. i was excited b/c i found some size 6 jeans in a slim. i brought them home and they were too small! the poor girl's belly was squishing all over the top! regular jeans are the way to go these days i guess...

i have added a new nickname to her very long list: fat kid =)