Thursday, April 14, 2011
Where can I begin.
We will get a few cans from Hartford tomorrow after we get madies blood work and height and weight checked..we will be recieving a 6 pack of Ketocal in the mail via UPS someday...Other than that this month looks like another out of pocket month for Ketocal.In case you wonder...well that is about 600 a month...PER MONTH. about 40 a can...if ya round it off..
Do any of these big whigs in the insurance companys have childrean with intraceable epilepsy? Lennox Gastaut Syndrome? Global Developmental Delays? I wonder.
The agents themselves well we cant go screamin at them...they have been nothing but kind and telling me they wished they could do something for me...its just the policies they follow. No sense in beating up poor Kathy from Anthem...
I try to understand that these companys are just following their policies and rules etc etc...
As a mom I am wanting to scream THIS IS MY CHILD!! MY CHILD! This Diet of 600 dollars a month can help her SO MUCH! HAS helped her! 4 years of horrible seizures and medications...specialists, therapies, unknowns...No reasons found WHY my child has her seizures..lets slap on a Fancy name for it and call it Lennox Gastaut. Then when she gets older we will scan her brain again and again and maybe throw in an Autism too!
My Madie angel has been just that...An Angel. Sweet happy (ok unless hungry, Tired or hurt or trying to poop...lol) Just overall happy..interactive as she holds onto your head giving her loveys and giggles..
I have thousands of pictures of her and over the years you can see it when she has bad days..the emptiness in her eyes and the circles under them.
I dont know how long Madie can be on this diet..I would like to hope soon we can start to introduce real food to her for the first time in over a year...maybe that will make it easier on the wallet.
To drift off ...we will actually be trying some unsweetened apple sauce in her mix..please keep some good encouragement for ME as I try once again to get my Madie to eat....
Although I have never tried this while she is on her Keto...may be different..
She is so much NOT like those old pictures of a "lost" little girl storing up giggles and loveys while seizures just nail her down..
This was from 2008...We had only been in our house a few months..I think she was on Zonegran and Topamax?? Unsure...gosh there have been so many..
She is getting bigger, HEAVIER, putting meat on her lil bones and when we get her bloodwork tomorrow we will determind if she is getting all the vitamins and minerals she needs as well..
She on ONE medication..still her Depakote Sprinkles. 2 vitamins...Her Carnatine and her half Scooby Doo (sugar free!) Seizures well...she had one large one on MOnday this week....I blamed our medicine mishap...I made a mess squirting it in her mouth and got it on her shirt and chin...sigh...OR was it low Ketones???
I hope I am not rambling too much...I am an ADDer and my brain just wants to spit out my thoughts as fast as they come...without forgetting! LOL
And Last Spring...May 2010
So I guess in a nutshell...We are going hell and high water to make this diet happen month by month...making sure we save enough each month or whatever to make it happen. Its been amazing...and to have to take her off the diet because its so expensive will break me in two. I cannot loose the madie that has emerged from this. Please wish me luck with trying some food with her...I have tried in the past with horrible luck..maybe just maybe this time will be better..
OH OH in the market for a new big girl bed for my big girl too!! I have good faith we will find her princess bed with lots of railings and pretty new bedding :) SO excited for that! :)On back burner for now...as we wait for ANOTHER appeal with insurance...sigh.
Have a great weekend!