Ahhhh Healthcare. ya gotta love it.
Well we are kicking off the diet today. A rough start. Supposed to have 10oz each feeding when she used to have 16oz of pediasure in the morning then an 8oz after school and then another 16 oz before bedtime. NOW we have to try 10 oz at a time..This morning she gagged and fussed and ate 6 oz of Ketocal and left 4 oz. We do not have any jucies in the fridge yet except for OJ so we mixed in 2 oz of that to make 10 oz of feed... Does that make any sense?? Well my stomach churned as I was mixing this into her bottle and well...I dunno what she thought of it. (gag)
Hubster took her out this AM and I graciously stayed behind so I could get some thoughts out. Kinda a mind cleansing. He went to Kholls the home of the "2 day mega sales" to hunt for a food processor to make her yum yums...mayo and chicken ya know..lol (my magic bullet bit the bullet...hardy har)
I am super nervous about this diet. I am a bundle of anxiety. Trapped in my anxiousness. Panic attacks galore. I NEED to stop looking at the whole picture and just take ONE day at a time. Madie is Madie. I want to KNOW what the diet will do. I dont want to worry anymore about seizures and her development and if this thing will mess with her tummy or make her vomit. Unfortunatly the only thing I can do is wait and see. Waiting is probably the worse thing you can make me do. Aside from dropping me off in a busy shopping mall...(lol)
We are still trying to get someone or some company or some insurance to pay for this stuff too..The samples from the hospital will not be enough. Like we need a case of this crap..the cans are small.. Talked to a woman at Graber Pharmacuticals that distributes stuff like this and she was so apoligetic to me saying that Anthem is not accepted by them and that since our secondary insurance CVS caremark prescription plan (dropping names) has denied the stuff 4 times already... She was so sorry saying there was nothing she could do unless we were on welfare section 19 (It would be given to us no questions asked) and if my husband was not working...She was so darn nice and thought that she was going to CRY talking to me! She was so nice..trying so hard to work it out. Gave me her number if anything and all I need is a credit card...(sigh) We are still going to work with Anthem instead of Caremark to see if we can clam it as a medical nessestity... that is to be continued. In the meantime there is a program at Miles' work that may be able to get some for us. we are waiting to hear back from them.
AND we will also try another company...Nutrica the company that makes the stuff.
Workin Workin...not giving up. We have been so blessed with supportive family and friend and even folks I have never met who live accross the US loving my madie and reading her story and giving me pointers or just a "You can do it mama" and it means the world to me.
In meantime we have about 2wks worth and a couple juice box size premade samples to get us thru for now.
Well time to go defrost some chicken and get more laundry going.
Please send good kharma and prayers we can pull this off...and mama can be less anxious and overcome her anxiety...Please throw in a good one for Austin too..he is about to embark on a journey that could grant him seizure freedom as well.