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




1 comment:

May said...

Hi Kelly,

Thanks for posting even though nothing much has happened! It feels like that for me too...not much changes with Vera now...but that's good isn't it? No new surprises, so keep telling us life about the mundane!

Wow she's a little lady now, isn't she? Amazing how she has grown.