Meeting another FPIES child and mom!

Today R and N got to go home from their week long stay at this same hospital where Little Man stayed a month ago. I got to meet them....we've already met online and I knew they were coming and was excited to finally get to meet another FPIES kiddo and the strength that stands behind them.

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.