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, February 26, 2011
My Kitchen...
Now? It's my least favorite room in the house. I have to spend hours in a room that Little Man should just be avoiding right now. It is a walk - through style kitchen so there is no gating it off. We have always had to keep a watchful eye on on little man, so he would not find crumbs, or eat soap, or a candle, or dirt, or sheet rock....
So, he is always near us. If I am in the kitchen, he is two steps behind me. But what is there for him to do in the kitchen? Have a snack? No. Help me cook? No. Go through my cupboards and "re-organize"? Yes. "Wash" dishes? Yes. In short- make a job while I do a job. Yes. It just seems at every turn with this illness is a new challenge, and not all in the form of food trials and nutrition!
I do look forward to the days when I am spending more time in the kitchen cooking food FOR him. He DOES like to help cook, and I do try to include him when I can but with so many unsafe foods- it isn't as easy as it should be, as easy as it is with his brothers. Until that day, my cupboards will remain an un-organized mess, the floor will be wet from splashed water from helping with the dishes, and we will continue to look for creative ways to make him feel included in a room that doesn't include him.....
"Included in a room that doesn't include him" Tears in my eyes right now!
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