So in case you haven’t figured out yet – my world revolves around my two little monkeys – EJ & Moo. My boys aren’t just special because they are mine, they are special because they both have a rare genetic disease. (Technically this disease is becoming less rare and that makes me terribly sad.) My boys both have Hirschsprung’s disease. My non-medical way of telling the story of this disease looks like this – while my babies were in the womb their large intestines formed but didn’t work. So when they came out of me they weren’t able to pass stools. The solution for the problem was for an amazing surgeon to take out their large intestine in it’s entirety. Now this isn’t a bad solution for my boys (we got VERY lucky in the severity of the their diseases) though side effects that they ended up with sometimes make me wanna cry… But I digress, the surgeries went very smoothly and the boys have recovered beautifully.
As most of the HD kids who have had their reconnection surgery, both boys ended up with some very acidic stools which caused breakdown of the skin on their bottoms. Thanks to our surgeon’s wound care specialist we got an amazing (reads – expensive beyond my wildest dreams! [reads – thank goddess for great insurance]) diaper paste that helps give their skin time to heal. They are both on special diets – (one which we all wish we could be on) high fat and high salt.
All that said, we got incredibly lucky. I have read of children and adults dying of HD. I have read of children having so many many more problems than my boys ended up with. What they ended up with was an easy version of the disease and a cow’s milk allergy. I can deal with this. Or atleast today I can.
If you are an HD parent, friend, or patient reading this, well, I send you my love. I send you the ability to breathe in the calm during those moments that seem to go on forever without an end in sight. You aren’t the only one out there and there are more than one way to handle the problems that HD throws at you I promise!!
Love & Peace