Today I'm grateful...

Seven years ago today, our sweet two-month-old baby woke up very sick and unhappy on the morning of his special blessing at church:

 Here is his sad little face later that afternoon, snuggling with his youthful/dapper/amazing daddy.

We had wondered for a few weeks if something was wrong with our little Clyde Monster; on a semi-regular basis his tummy would get real big and real hard. We had called and talked to our nurse about it, but as soon as we were on the verge of taking him in, it went back to normal size. Clyde seemed in perfect health otherwise; he was nursing well and going through loads of diapers.

(Here's the best picture we have of what we referred to as his Buddha belly - this was about three days before his blessing.)

That Sunday it became clear that we needed to see his pediatrician. Our appointment was on Tuesday, and immediately when Dr. Schaffer entered the exam room she looked at Clyde and said, "Take him straight over to the hospital. I'll call and order the tests." And I'm 88% sure my heart stopped for about thirty seconds!

We walked across the street to the hospital, where scary possibilities like tumors were blessedly eliminated quickly, and we were left with a diagnosis we could neither pronounce nor spell nor understand: Hirschsprung's disease. But now I know it backwards and forwards! While Clyde was a wee fetus, his large intestine didn't develop correctly - the last portion lacks essential ganglion cells that allow it to contract and move things forward, like a conveyor belt. In Clyde's digestive system, waste was just building up and up until there was enough pressure that it was forced through that section - hence the looping pattern of a distended tummy followed by a regular tummy, intermixed with dirty diapers.

We stayed at the hospital overnight as I was trained in a mini-procedure to help clear out Clyde's colon - something I got to do 8-10 times a day for the next seven weeks, the traumatic nature of which (combined with the overall grossness) I'm not sure I'll ever recover from. Just before Christmas that year, Clyde underwent a seven-hour 'pull-through' surgery that removed the affected portion of his large intestine. 

Since then, we've had ups and downs with Clyde's body and the last few months has definitely been a 'down'. We're blessed that only a small section of Clyde's colon was affected (his is called 'short-segment' Hirschsprung's as opposed to 'long-segment' which can pose more problems initially) but the problem is that his actual sphincter is also affected, and not as easily fixed. Using an analogy from Clyde's pediatric surgeon, if you think about an automatic door (the kind that slide away from each other to open, ala my old Rite Aid store), normal spincters are able to essentially open and close to allow waste to exit the body. Clyde's can't do that; it's permanently stuck at 'almost closed'. This causes the same problem to occur - a back-up that is then forced through a little at a time when enough pressure builds up. 

Unfortunately that usually happens at inopportune times and is fairly unpredictable and very hard to avoid. We use a combination of stool softeners and laxatives and strategically timed bathroom visits, but there's only so much we can do.

 Which is where Botox comes in. The same chemical that's injected to relax wrinkled foreheads can  be injected around a tight sphincter to paralyze the nerves and relax it just enough to allow larger amounts of waste out. Our amazing pediatric gastroenterologist performed this procedure on Clyde two years ago and it's what allowed Clyde to transition from diapers to underwear and attend 'real' school as a first grader. 

We had hoped that Clyde wouldn't need recurring injections, but that doesn't seem to be the case. He stared having problems last spring that we attempted to combat with medication alterations and physical therapy - both of which helped somewhat and got us through the summer. This fall it's been very clear that something more needed to happen. 

 Hirschsprung's is really, really crappy - and I mean that in every sense of the word. Beyond the havoc it wreaks directly on Clyde himself, it also affects family's activities; we aren't able to travel at all right now, and very rarely other times. On a day-to-day basis, I always have to make sure I'm within a ten-minute drive of Clyde's school in case I get a phone call, as I have several times a week since mid-September. It limits Chuck's and my freedom; we can't leave the boys with teenage baby-sitters for long periods of time or around bedtime, leaving Grandma Pam to serve as our part-time, unpaid (but always sweetly willing!) nanny on her weekends home.

And again, then there's the effects it has on Clyde. I can't imagine the uncertainty he faces going to school every day, not knowing if he'll make it through the school day without any problems. The class time he misses when he makes his regular before and after lunch trips to the nurse's office to use the restroom there in privacy. The soccer practices that were cut short and the game he missed this season because things were so rough.

Which is why I'm so HAPPY today - another round of Botox injections was finally approved by our insurance and is tentatively scheduled for this Friday. It's been a really rough two months for our Clyde Monster, and I'm thrilled that things are finally coming together. We're prepared for the eventuality of another major surgery, but that will need to wait until his body has grown and developed more. But for now, we're grateful that these injections can serve as a solution in the meantime.

And that's how this post started - gratitude. As I got the news that we were approved, I was filled with so much gratitude that we can move forward and Clyde's life can return to being a bit more normal. Clyde and I talk a lot about his Hirschsprung's and how it's a challenge that he has to deal with in his life, and how that's okay. We talk about how other kids have to deal with things that are even scarier and ouchier and sadder. We talk about the blessings that Clyde has been given that help him cope with this challenge - like a supportive school staff and teacher who work with us and Clyde so well.
 
And the bottom line is that no matter how wretched and difficult and straight-up gross Hirschsprung's is, we'd deal with all of it a hundred times over to have Clyde in our lives and otherwise completely healthy.