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."

Wednesday, July 13, 2011

From Pale to Pink!

It took a few days but the effects of the transfusion combined with the sun at the lake and Little Man went from pasty and pale to pink and perfect! We don't notice it as much day to day but.....such a difference.....

The transfusion brought up his hemoglobin, and he was able to be an active toddler for a good solid week. Transfusions don't do much for iron stores and his are very low, so it shouldn't come as a surprise as I start to catch the symptoms of a declining hemoglobin again.    Fatigue, he loves to play outside, wants to play outside but his fatigue keeps him watching from the window, or asking to be held or ride in his stroller (around the yard!).   Today I caught him licking on wood is a sign of his PICA when his iron deficiency is rearing it's ugly head.  It has barely been three weeks!  But then he will have hours where he is happily playing- with no indications of fatigue or a chronic illness.   So, am I reading in too much?  Or am I catching the early signs because we've been here before?  

His color still looks good, he's not pale and pasty....yet.    We will get labs and weight check again tomorrow and keep looking for clues for the next steps....stay tuned as I attempt to keep things updated here!

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