Today is October 22nd, the expiration date of Michaels only complete food source. Since our learning of this back in November of last year we have found Hemp and Sugar….which brings us closer to a hope of keeping him healthy and happy. Michael is our brave super hero. Even though he has been through so very much in his 4 years he is still the sweetest little boy.
We have been in contact with the company since day one of our figuring out that the new label formula (that they claim nothing had changed with except the appearance of the label) and been in contact with our representatives and the FDA. The company states that nothing in their label released in August 2012 had changed but that their yet again new label starting in January of 2013 has in fact changed….maybe they are just learning to cover their hiney. The vice president Steven has been in our house and even for himself stated that the old label is whiter and tastes like potatoe water, that the new label is more yellow and tastes a little sweeter and does go rancid as we saw with the formula I made that sat out at room temperature, and that the new and improved label is more yellow and tastes just like regular milk you buy at the store. I know that the thing we would complain about is taste and that is why Michael will drink it out of a bottle instead of a cup like he does with water. So I know that’s why they made the change. I am sure profit has something to do with it as well.
Today hits hard because I am scared, yes I tell everyone I am fine, and we are getting through this, but deep down I am so scared that we are going to loose our son and I can’t do that….I can’t let that happen. I will fight and be their voice and try to find answers.
I have found strength in some fantastic FPIES moms with the FPIES Foundation, it makes you feel like family, their support is amazing.
We are struggling with medical debt, have maxed out our credit card, had to get another credit card, are eating boxed meals for Thomas and I just to be able to supply Michaels diapers, and food trials and all of our bills. Please help us with prayers and kind words. Ignorant word don’t hurt me anymore it just makes you look ignorant.
My life is better because of Michael, and Michael has touched the hearts of everyone he has met along this journey, local people, people in many other states, children, adults, doctors across the country. Please know that we are doing out best to keep him alive, and I will continue to fight with everything I have.
more to come…