Sunday, September 4, 2011

Whistles and Updates.

What I do know is Madie loves her giggles and whistles these days. Yup she can whistle! if ya whistle for her she laughs and purses her lips to do the same. Very Cute.
Alot I guess going thru my mind these days I was inspired to post late last night but was feeling that if I did I would be up way to late.
Madies Bloodwork came back excellent. She is getting all her vitamins and minerals and is hydrated well and her organs are functioning..Depakote Levels are unknown right now I did not hear from the nurses I heard from the be continued.
We were also victims of the dang hurricaine Irene that swept over CT knocking out power and beach homes all over the state. We were without power for about 3 days..on the 4th we were UP!~ YES its sucked big time. We are fortunate enough to have grandma close by so we stayed there with showers etc. Whew. I am glad to be home and when I heard there was power back on I was outta there like a bat out of hell to get back home to the comforts of home. Madie was a trooper. Sleeping in the itty bitty pack and play. We have friends who have been without power for 5 plus days..I just hope everyone gets their juice back soon.
Had Preschool Open House last Friday..madie decided she was going to go to sleep about a half hour before we were supposed to leave so we were a little late...It was a big mistake going..all she did was scream and cry and reach out to me the whole time I was making my poor attempt to god forbid socialize...sigh.
She begins on Tuesday after Labor Day and although very behind her peers PreK here she comes! New extra added day per week and new hours. 1230-3 on Mon-Thurs. I am really nervous that she will be all thrown off and fall asleep at school or just get over tired or I dunno....JUST LET HER GO MAMA! LOL. I am still not ready to put her on a bus.....although I really think she would like the cool ride to school...they would probably have an adult to ride next to her too...
Constipated yesterday and was barely eating her keto...which led to big seizure in the night...sigh. Today she has been kinda lethargic and fussy..stil no stinky pants. I hate to resort to the suppositories but sometimes I just gotta break the damn dam. Poor Kid. I can hear her waking from a short nap right now a little winey.
I AM believing this Keto Diet is helping my Girl..Just have to get her to EAT. sigh...I have been luckier with her turkey and chicken all mushed up..going to try beef..although I am not a big steak eater but maybe Ill set aside some cooked ground beef when I make hamburgers tomorrow for our BBQ...hmm maybe baby..
I was also trying her turkey yesterday and she was happy as a clam eating and making her noises and smiles...even opening her mouth for the spoon! But then just as fast as she was happy she was upset...have no clue why! But she ate half the jar! dangit! What is up with our kids and their switches! Do you all get that? Like super happy one sec and then BAM out of no where the tears and screamin begins! I reeeeally wonder if sometimes its just a lil gas or her hard poopies tryin to make their way out...OR maybe some kind of tummy commotion with her meds or Carnatine? Its not ALL the time but like I said a switch goes off! I guess I still love ya bipolar kid..:)

Seizures continue to be about 3 a month...We plan on meeting with nutritionist in her clausterphobic little room at the Hospital soon in the next couple months..and a follow up with Nuerology in Dec. It never stops breaking my heart when she seizes...although not so frequent they are strong sums a bitches... I just wonder if she was compleatly seizure free what would she be like? Oh the Dreams I have. I just want her little legs to get strong and be able to get herself up. But what are strong legs when ya dont have the brain connection to understand how to get up? The Process...ya know? Grab and Puuuulll up. Things that other kids Just DO. It amazes me so much how kids just do things!
Well I can go on and on and I dont need sympathy from people or words of "Dont Worry" cause reguardless of that I WILL worry..I mean how old is too old to give up hope? One day at a time Boo Boo.
AnyhoOooOO..I am scramblimg around to get the house clean enough for our small gaithering of folks tomorrow...I am a freak with yucky dirty corners...I hate em but it takes alot for me to get down and scrub em! ICK and ICK.
Well I guess that is all the rambles I have today..
Hope everyone is well and having a great weekend.

1 comment:

Smilen Champ said...

My name is Jenna and I came across your site. Madi is an amazing, courageous strong and determined fighter. She is a brave warrior, smilen champ, and an inspirational hero. She is a precious, and special earthly angel. I was born with a rare life threatening disease, and developmental delays.