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."
Wednesday, August 25, 2010
Meeting another FPIES child and mom!
And strength I met. R is a super mom, little N has been sick most of her life like Little Man. We share many commonalities in our children and our experiences. Little N has had a tough-tough road and, as a testimony to her parents sacrifices, she looks just like any other 10mo. old little girl. She is adorable. I look forward to having her and Little Man meet the next time they come to town.
Progress is made in small steps. The doctors here have now seen at least 2 FPIES cases within a months time, will they start to utilize this great opportunity to learn more so they can continue to help? Continue to be the world renowned hospital that provides hope to so many other families for so many other rare illnesses?
Only time will tell.
During our Dietitian visit at CHOP, we commented how it was strange that this fine medical institute does not see this. To which our Dietitian replied..."oh, they see it- I have no doubts they see it, they just don't recognize what they are seeing". She went on to say that CHOP didn't either a few years back but with continued EE cases, they kept getting this subset of kids with the same common problems. Once they began to recognize it, they moved in strides to begin to help. CHOP is a leading FPIES medical facility. I do so wish that we lived in a place that understood, recognized and knew next steps for Little Man's rare illness but try to keep the positive perspective that by caring for Little Man (and Little N), they will only learn and be better equipped to help the next FPIES case that comes through the door, and then continue to build their knowledge from experiences gained. In my world, there is always a positive side to things....despite not getting the full support we need for our child, we hope and pray that others soon will.