Let's Talk About Poop

I don't want to be too descriptive or go into too much detail, but poop has a major impact on our lives.  Unfortunately, many kids with Sanfilippo have chronic diarrhea.  It occurs many times each day.  Waverly typically has at least 1 clothing change per day, but sometimes 2 or more.  The reason I wanted to talk about this unseemly topic is that it truly does dictate what we do, where we go and when we go.  At times I feel like we are held captive by poop.  It usually involves the fact that there is not a great place to change her (she is obviously too big for the fold down changing tables - so is Oliver).  And I do not like the idea of laying her down on a disgusting restroom floor - yuck.  Plus, with each "movement" there is leakage and that can cause additional headaches.

Our kids go through enough because of this tragic disease.  For some reason the poop thing has always been a stressor for me and a huge frustration.  Nothing seems to help - diet, probiotics, supplements.  And it always strikes at the most in opportune times - in the check out line, on rides, car trips, restaurants, bus ride home from school, etc.  I hate Sanfilippo.  I hate poop.