FPIES stands for Food Protein Induced Enterocolitis Syndrome and our youngest son has it. This blog follows his story on this journey: our challenges, our triumphs, our adaptations as we navigate through this new world created by FPIES.
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, April 9, 2011
A walk to the Park....
We get near the park, Little man, who had been riding in the stroller, insisted on getting out and walking the rest of the way, or rephrase that- running! The park has a hill and he is hesitant as he begins to stumble, he looks back and reaches out for me....and then pulls away...he wants to do it himself. I pull back, half surprised at his independence, and half beaming with pride that despite everything he is going through, he is developing on track. After all, he has these big brothers to keep up with!
We get closer to the park, and I notice the other kids who had been approaching are all holding their afternoon snacks...graham crackers clutched in the hands of a small group of 1-2yr.olds (someones home daycare). I can't help it, I say "oh no" out loud- not loud enough for anyone but my 10yr.old walking near me to hear; but that was enough. He looked up and immediately saw, and knew, what I was talking about. "I'll watch him mom". I didn't ask, but he wanted to do it. He took it on himself to stand guard and follow his brothers steps to assure no accidents happen. He also discovered a recently discarded ice cream treat and some other candy wrappers. Thankfully, Little man did not even notice. He is past the stage of putting everything unknown into his mouth (thank goodness!) and he is approaching much better understanding of what he can and can't have...even saying "mine" to things that are ok for him to have. Which, again makes me surprised at his independence and proud of him all in the same moments. I can't help but feel a little bit sad though too, that we even have to teach him how food is "danger"...especially when everyone else is eating it.
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