Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Saturday, August 7, 2010

A crumb and a setback?

We haven't had a crumb ingestion since May, that is until Thursday.

Little Man found a flake from a pastry his 3yr.old brother had eaten for breakfast. What a treat! I wasn't home but Little Man's daddy did the best he could to finger sweep it out. If someone were to see us do this, they would think we were afraid of our child choking, or eating poison. Well, with FPIES- it's the same thing. He was hopeful he got most of it, but doubtful he got all of it. Little Man's fussy behavior the rest of the day, diarrhea diaper the next morning, and continued stomach aches for the past 2days tells the tale.

A setback? Not now! Not as I build him a new formula and get SO close to being able to introduce some safe foods into his diet and work towards building him his tiny menu. But then it occurs to me, he didn't throw up....so we celebrate the small things...through all the whining and clinging- we celebrate that he didn't vomit violently. Does this mean he is less sensitive than he was 2mo. ago? As we move away from the trace corn proteins that have continued to assault his gut, does his system FINALLY start to calm down? Maybe....

I have said in the past, sometimes I wish he would just throw up when he would get a food that he is clearly reacting to....it is drawn out for days when there isn't vomiting.

We were so hopeful he was getting better, and we were dreaming of first foods and tiny menu's and normalcy again....a crumb sets us back.

2 comments:

  1. I know this feeling. There are always little setbacks, but it does get easier for sure. Hang in there!

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  2. Hi Joy
    My name is Suna and I'm from Australia, my little fella doesnt have FPIES but he does have the severe mucous stools and diarrhea and is on a limitted diet and neocate. I just wanted to let you know that we have an active yahoo neocatekids support group here in oz and we used to have a lady post a few years ago from the U.S.A whose little girl was severely allergic to corn and the starches and she ordered the british or Australian neocate which apparently doesnt have the corn syrup solids in it and her little one finally began thriving, it was a big hassle getting it in but may be something you can investigate if the hemp stuff goes pear shaped. You are an amazing Mum and I wish you and your little one all the best.
    Love Suna in Oz XXX

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