Sometimes it's best to shut your trap. I know I've inserted my foot in my mouth more times than I care to remember.
But lately - and specifically when it comes to Curly's Hirschsprung Disease - I've been very grateful I opened my big fat mouth. In fact it happened twice today.
We met with Curly's surgeon for an annual check-up. I blathered on about how Curly has bad reactions to oranges and poppy seeds, and how his tummy troubles have been kept in check lately - which I partially attribute to the probiotics we've been giving him (referred by other HD parents who've been there, done that).
He was fascinated not just about the benefits of the probiotics (which he said made total sense), but also the network of HD parents I've connected with through the Internet.
First, he wrote me a strongly worded letter to send to my insurance, who will not let me use my medical flex spending account for Curly's pricely probiotics without a doctor's referral. The letter talks about his susceptibility to enterocolitis, which is life-threatening, and how use of probiotics could decrease his need for future visits and hospitalizations. (So take that, Insurance Lady who was giving me grief on the phone this week!)
But secondly, and most exciting, was his interest in doing research on Hirschsprung, specifically about what can be done to reduce the conditions these kids live with after their surgeries, which no one seems to know much about. You mostly just hear: They have a surgery (or three) and then they're "fixed up."
He then asked if he could tap into my network and if I thought the other HD parents would be willing to fill out surveys about their experiences.
And since we're all out here on the Web seeking information - and many are frustrated with the lack thereof - I figured we could find quite a few recruits. How cool if this research could help our kids and future generations of HD kids and parents!
8 months ago