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."

Monday, November 22, 2010

Thankful for...

I am thankful for this little face.   Little man has been recovering from recent "fails" and returning back to a baseline.  His demeanor has been good, great.  His activity level has been good.  His pain has been minimal.  His appetite has been good.   Tomorrow we bring him in for a weight check to see if he is gaining (he should be - he's eating 1000 calories/day, so he is meeting his needs).  But weight loss has always followed his reactions.   Was soy a "reaction"?  It wasn't an FPIES trigger but we still are not sure what the symptoms we saw were- if they were attributed to soy or to food dye.   Whatever it was, it has done it's damage as Little Man's recent scope biopsy's have been coming back and are showing some villous atrophy, along with his inflammation that was visible on scope.  The colon biopsy isn't back yet and that may tell more.  More tests will need to be ran because we are not sure why there is this villous atrophy.   We do know what it means, villous atrophy means malabsorption.  Little man can not afford malabsorption of nutrients on his already restricted diet.   We meet with the GI doctor tomorrow to discuss next steps. 

More pieces to the puzzle...

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