Wednesday, June 30, 2010

comming soon....Ketosis!

From this

Going into this Diet I am skeptical of course. I mean we have tried about oh 8 or 9 medications including 2 vitamins..
Madie is 3 and a half and still having seizures. To me its become a way of life. "oh there goes another" "oh lay down madie, Its ok.." "Don't worry folks she is OK...she does em eeeevery day" I kinda at times just blow em off. Yes its heartbreaking and i am torn up inside each time I see her have a seizure wondering if each time she gets zapped that her brain is becoming more damaged and things that she is trying to do are beging told "ohhhh no we dont want you doing that...too much learning" ZAP. If I broke down each time Id be a wreck!! Oh wait, been there done that.(whew)
Milestones are a dream of the past. for real folks I just assume if madie will do whatever it is she is supposed to do she will do it on her terms. Of course my biggest concerns are weather she will have purposeful use of her limbs...hands, legs, arms, ya know able to coordinate them for moving around. She is a great grasper of her toys and everything goes into her She is great at opening her mouth for her food (although not grasping the whole chewing thing) when I am feeding her (that is new the past few weeks) she is still an expert sitter and gets mad at times when you lay her down she gets right up to sit! haha someday..someday...maybe? I am ready for it! bring on the babyproofing!! Oh and the giggles...oh man. Belly farts and funny noises...even a small "pssst" in her ear will set her into giggles..she loves to bounce and be flipped upside down "movement games" swings and vibrating toys are a fav too. Loves her OT sessions when they swing her on the platform swing.
But I love madie for who madie is. and well,Its frustrating and heartbreaking when I see other little girls with their mamas at the store or at lunch or even at school running and giggling with their peers... its how she was brought to me. Seizures and Delays and sweet giggles and pigtails and crys when I brush her curls and always wanting to be held up high and loves bouncing and walks in her stroller and sitting in the grass...
Just My Madie. Wanting lots of attention these days! gets bored just playing at her noisy box! haha although she still loves her krinkle papers and her loofas that hang from it. :)
I would say about 2-6 seizures a day. Its so unpredictable! Sometimes I think that if we spend a day say poking around town and running errands I see opposed to being cooped up inside on a hazy hot day or rainy cold day...hmmm dunno.
She sure has her moments of course...MELTDOWNS and Tantrums I call em! If she is not getting what she wishes she is MAD. sometimes unconsolable! Just cant wait till that turns into a say 7 year old!
She is getting big too...and "lugging" her around is getting harder for sure. Maybe as her body gets bigger she will try more to move...we can only see..
I sure dont know how I will lug a 7 year old around! may need to hire some muscle for that! or get my bum to the GYM! LOL
SO anyhoooo
Keto Diet...another step in this battle to stop seizures..sigh..
Dietician was all kinds of excited and I told her that I just wasnt..I mean we have tried so much...and a DIET?? Well "ok" lets give it a whirl! ONE more down!
Still waiting for Madies Urine test to come back before we can start and that is my fault for not remebering to do the test sooner...but after that we can get started.
I was disapointed that they did not have more of a plan for madies meals etc etc...seemed just like the first meeting of discussion..
She said that it will take a couple weeks to get her body into the diet and then they like to give it a couple months...and if we DO see at least a reduction in seizures then we would be on it for about a year. AND if we DID see NO seizures then we could actually begin to get her off her med!
Kinda Far fetched I know. But this is what I was told. and I am NOT getting all crazy about being med amazing would that be though??? Kinda sorta amazing.
Well anyhoo...I got a crying kid in the next room with a present in her diaper..
Ohhhh The Joys. Maybe a good walk today...DANG its gorgeous! The first time in 2 weeks I can say that I am not quite ready to open the windows cause its too chilly!

OH two full unopened cans of DUOCAL up for grabs! eh?? eh?? or else I will give them to the kids in the GI unit at the Hospital...its like 60 something bucks worth of powdered GOLD! LOL


Noah's Mom said...

Hi. I've been following your blog for a while but I've never posted. My son is on the Keto Diet (has been since Nov 09). I just wanted to wish you luck! It's a bit overwhelming, I know! I really hope Madie responds to it and very quickly! :) Take Care, Tricia (mom to Noah)

blogzilly said...

All I can say is that I hope it works. You seem to be keeping upbeat, which is good, but yeah...the looking around at the 'other families' thing? Totally grok that in a big way. Primary reason I avoid most social functions.

Take Care...

Holli said...

I'm really crossing all fingers & toes and saying a few prayers that this is going to be good for Madie!

Lots of luck getting this ball rolling! And, by the way, I thought a diet was too good to be true too, but I've come across sooo many kids that have truly benefited from it. Austin included -although we are having higher seizure days lately. Even with that said, the diet really CAN work...