Monday, June 11, 2012

Sometimes I Forget

There are days where my whole world is consumed by FPIES.  And then there are days like today - where I *almost* forget.  Good days like today where Cutie Pie is in a great, giggly, goofy mood.  There is no screaming in pain, no mucusy diarrhea, no projectile vomiting.  Days like today where she eats like a normal kid (okay, maybe not normal but at least she doesn't act like food is evil) and even takes naps.  Days where I read the ingredients on the cookie box and reeeeeeeaaaaaaaaally think about eating one myself.  Days like today when I start to doubt this FPIES thing is even real.  

Ironically, these are some of the hardest days for me.  Don't get me wrong, I am ecstatic that everyone is happy and healthy.  I know it is because we are super diligent about making sure Cutie Pie stays safe.  But I admit days like today are the hardest because I have to find some super self-control way down deep and resist the urge to treat her like a "normal" baby.  Resist giving her a graham cracker to gnaw on.  Resist jump-starting a new trial even though we are only on day four of our sunbutter trial.  Resist, resist, resist. 

And then I get scared.  The last time we were in such a good spot was right before our big quinoa fail.  I was doubting that she even had FPIES and thought maybe her other reactions were just coincidences.  And then it all came crashing down around us and she hasn't been the same since.  That was almost two months ago.  TWO MONTHS it took for things to get back to normal.  I am terrified of another reaction, another set back, more wasted time, and I'm afraid that by feeling good about where we are means I am somehow tempting karma to get us. 

But for now,  I will enjoy this peaceful afternoon.  At least for now, right in this moment everything is right in our world. 

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