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, October 11, 2010

16 months

Little Man is now 16mo. old.  Some days I think "where has the time gone"? and other days I can't wait for it to go faster.  Most children with FPIES outgrow this condition by their 3rd or 4th birthday.  My suspicions are high that it will be closer to his 4th birthday rather than 3rd that we even consider food trials for his trigger foods, esp corn.  The understanding is that this is a T-cell response and that these T-cells have a 12-18mo. "memory"; so the common recommendations/practice is to wait 18mo. from diagnosis (or when baseline is found/trigger foods pulled from the diet) to trial this food again.  The experiences are that, in most children, the T-cell has forgotten it's attack memory for this protein. 

For a 16mo.old, he is on the smaller side.  He was born in the 80th% for weight but now hangs around the 10th%.   His growth chart looks like a mountain range rather than a curve.  This is a fun age, as milestones double by the day, and words start to take off!  Just this week, he has added 4 new words to his vocabulary- 4 words that he initiated on his own!   The other day, he wanted a sticker on his shirt (the "prize" at the pediatrician's office is a big sticker that we stick on his shirt for him to wear with pride) so he saw a sticker at home and he said "stick" and pointed to his shirt!  So proud of him, I gave him two!  And it was just a month ago, I was beginning to worry his language was falling behind.  Was it developmental?  Was it being #4 - so many helpers, why speak? He certainly showed us he processes things well, has a good memory and can follow simple directions but I was beginning to worry about his speech.    I know better, that every kid has their own normal and that not everything is done "by the books" but with Little Man- I worry in a different way.  I worried that since he wasn't getting good oral-motor development from eating that he will struggle with talking....and I still worry about it.   But when he adds new words, I worry a little less (and celebrate a little more).  And one less thing to worry about is a good thing.

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