Monday, May 4, 2015

Happy National FPIES Awareness Day



We are happy for awareness, as we celebrate the first ever FPIES National Awareness Day.  It's near and dear to our hearts as our precious Mallie Lynn has taught us, no two diagnosis are alike.  It's a journey.  It's taught us to trust God, trust your instincts, ask questions of your physicians, and don't just settle for an answer that isn't helpful.  
Our FPIES has looked different from week to week after being diagnosed at two months old.  Mallie Lynn is now 7 months.  Happy as a lark, but dealing with belly issues we long to fix.  She is unable to start solids so far and we continue to trial foods through breastmilk and search for a way to get her to baseline.  
Most mommas throw dirty diapers out as quickly as they can wrap them, while an FPIES momma inspects them with the vigor Langley.  My iPhone has a special folder dedicated to pictures of...... p o o p.  Sleep is a luxury with all babies reserved for top shelf occasions, but for our situation nights are the worst.  All that eating done during the day tends to show up in gas and belly pains in the midnight hours.  
We are so thankful for our darling girl's happy demeanor, her ability to always smile.  Her go with the flow, I'll do what you need me to attitude is much appreciated.  We are thankful for her big brother and how much they dare each other.  He makes her smile the biggest of grins and is always concerned about her happiness.  We are also grateful for family and friends, who love and support us.  Who took on that great Pie to the Face challenge and to those who have donated!  We are far better off than many and we hope you'll help us spread the word that this thing is #rarebutreal and the more doctors and people know the better.  

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