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."
Sunday, September 4, 2011
Reaction? Vit.C deficiency? Anemia?
He has been doing pretty well all week, gratefully and thankfully well. I don't even know what is going on but yesterday he was fussy a lot off and on, he wouldn't climb the stairs- just sits at the bottom and calls/screams for me. He took a really long nap yesterday and today (not a bad thing because earlier this week he wasn't napping at all!). All day today, both Jeremy and I are noticing he is pale looking, purple eyes, and the most concerning symptom is this breathing- kinda a shortness of breath like he has been running around. He isn't gasping for breath, and his heart isn't racing- why is he doing that?
This is just one of those times when I don't even know what to do. Bring him in? Where- the ER? I go back and forth all day, I will look at him and just think - something isn't right and resolve to take him in/call in; and then he will start playing and then I feel like- maybe I'm just seeing things or over-reacting, maybe it's nothing at all....and than back again....around in circles, what to do?
And, of course, it is a holiday weekend...and he's going to be re-admitted this week anyway but will we even make it to then? Praying tomorrow shows me another sign of what to do....wait it out, or take him in, or what?!
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