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."

Friday, July 13, 2012

Is it just the heat?

Little Man had been doing well, then the last week of June brought really, really hot days....and we tried to stay cool; but it wasn't enough.  His appetite tanked, and it became my full time job (not that it isn't already) to push more and more with the bottles.  I was worried that he wasn't even taking enough to stay hydrated, much less for his nutritional needs.   And I prayed for a break in the heat and we kept the air on and kept him inside and tried to keep our activities low key.   And I wondered why he was responding so negatively to the heat? He would sweat within 2 minutes of being outside, and 15minutes would have him drenched in sweat!?! 

We enjoyed his brothers 5th birthday party- a backyard BBQ- and he was doing primarily well that was the days that followed that he started to decline.    Was it the heat?  Was it being too busy all week preparing for the party and having church school and going, going?  Or, did he get a corn exposure?   

Something isn't right because he clearly started going downhill that week....maybe he didn't recover from the IV iron (the dextran that is corn), maybe his body isn't recovering from the Alimentum inflammation?, maybe it's something else in his diet, maybe it is the ProViMin,...

I'm getting of the last times we spoke to our GI she relayed that she was "getting frustrated" that we don't understand why his gut doesn't function properly; and that she wanted to have him admitted (somewhere, not necessarily here) that scares me.   It scares me to have him admitted here because they always set him back, it seems no one even tries to understand his FPIES and the mechanisms that happen in his body. And getting admitted someplace else?   Where?  Where could we travel, be away from the boys, spend time away from my family, and work, and put him through more and more tests and get actual real help and answers?   Where??  Where would we go that we don't get the overwhelmed door shut in our face, travel how far to say there is nothing else to do, nothing else to help him....

So, with all of this weighing heavily on my mind, and little man clearly not getting better- even with the break in the heat, his appetite was not picking back up and his energy was really low.  His sleep was getting more out of whack- not waking in his sleep in pain, but unable to fall asleep or sleep very long. Something is off, what is it?   

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