If I keep blogging about FPIES, it is because it is on my mind (and stomach) constantly. It consumes me. It consumes our family.
I have already noticed Jacob starting to mill through the carpet and picking up little crumbs left behind. One of the tiniest molecules of food eaten could set him into full blown shock, as we learned with rice cereal and it takes weeks for him to recover. Yes, that is all it takes.
I have read and talked with other FPIES mommas who have been warriors in combating this condition. They are amazing and they inspire me. They are strong women of courage. They have battled FPIES mostly on their own, teaching doctors as they teach themselves. They are pioneers. I read their stories and realize that I am NOT crazy. It is insane how their stories mirror our own. It takes a lot to feed a new food to your baby love not knowing if it will be a trip to the ER, but these women have come together and formed the FPIES Foundation just a few weeks ago!!!
I have been reading some literature and becoming as proficient as I can be with such limited research, but I am finding common threads to the success stories and I am forming a PLAN OF ACTION!!! No more of this sitting idly by hoping Jake will pick up a spoon and sit at our Thanksgiving table shoveling in whatever he wants. Nope! Not gonna happen. We've got to work towards that, and someday he will...someday. Even if it is a modified version of all that is good, he will get there in his own way and fashion.
Here is my POA (Plan of Action). It will require me to be diligent and there is NO room for lack of self control. The rewards will far exceed the frustration. If I know I can get sweet Jacob to a baseline of happiness and nights full of sweet dreams, then I am up for the sacrifice.
Here it goes:
I need to do what's called a total elimination diet. I could care less about loosing weight or being skinny. I did not have a baby to look like a super model. Duh! Jake being happy and eating IS my goal. If you think I am obsessive, if you think it sounds like too much, then please, walk in our shoes for a few nights. It is not cake walk and you too would do whatever you could to help your baby's tummy feel better. I am ready.
First: I eliminate all foods and start very basic for 2 weeks following this and slowly add more things: http://www.askdrsears.com/
This also helps his stomach to heal from all the offensive foods eat and prepares him for starting solids AGAIN.
Second: Once he starts sleeping better, after two weeks I will start feeding him something basic, then trialing foods and vitamins. I will also get him on a pro/pre biotic to help strengthen his stomach that does NOT contain soy, wheat, dairy, etc etc. I am only hoping this will goes as planned, but we will see. I do NOT expect perfection, just small successes.
Third: More trials for me and him, possibly get him on Nutramigen AA??? or Neocate? He had tummy cramping and didn't sleep good when we spoon fed it to him. Was it something I ate, or was it Neocate. Who really knows??!! Ahh!
Forth: I am really tired right now and forgot what else I wanted to do.
Fifth: Keep working on the above aforementioned plan all the while not ripping my hair out or loosing it because of lack of this or that.
Everyday: Work on sippy cup. Today he sucked 4 times. Success. It really is in the small things.
There you have it. My POA in writing. I dont expect perfection, just as I mentioned success in the small things. I believe that Jake will get better one day. At times I feel so weak, but I need to take action.