I’m not talking about Pooh Bear, here.
I’m talking about-you guessed it-poop. When you have a child with Spina Bifida, you can’t escape it. Most parents deal with dirty diapers until the age of 2,3, or 4 at the latest, and are glad to be done with them.
Lilly is seven and a half, and we’re still dealing with them.
But not to the extent we have in the past. It’s getting better, and the reason is because of the new bowel program we’ve worked so hard on this summer. It’s called a cone enema, and I knew it was our last hope of keeping her clean.
Summers were always a frustrating time with the issue. Lilly loves to swim at Laurel Lake every summer, but of course we need to put swimming diapers on her. The largest size still fits her, but just barely. But it never failed that she’d have a fairly “poopy” day on these days. Every hour or so, I’d have to change her inside the hot, closed up sun shelter we had on the beach, or troop her up two flights of stairs to the dirty, spider-infested changing room and lay her on a bench to clean her up. I’d haul her huge bag of diapers, catheters, wipes, lubricant, diaper cream, rubber gloves, and sanitizer with me and spread it all out. Then I’d proceed to peel off the wet, dirty swimming diaper, careful not to spill out any solid contents (though the water would mostly swish it about and reduce it to the consistency of the sand that also made its way in there). And I’d wipe and wipe and wipe sand and poo away until the sweat dripped off my face. Several times in 5 or 6 hours I’d do this, even this past summer when we were still getting the hang of the cone enema.
The procedure itself is fairly simple; it’s the variables that make it a long process of trial and error. Every night or every other night? Plain water, or additives? If additives, baby soap, glycerin, castile soap, or something else? How much water, and how much additive? How long to keep it in? How long to keep her on the toilet? Keep giving Miralax orally while on the program, or can we dispense with it?
After eight weeks, I think we have it almost where we need it to be. She’s staying clean for most of the day, and may have an accident later in the day, or maybe not. Last Wednesday was her first day of second grade, and my goal was to have her clean at least socially, while she was at school. I still put a diaper on her, just in case, but if things go well, we might be able to put her in her Frozen “big girl underwear” we bought last week. Hurray!
It was a lot of hard work, and still is-every night we have to carve out an hour from start to finish for the procedure. We may have to miss out on some evening events (school or otherwise) because of that hour. But I wouldn’t give it up for the world, if it means some kind of normalcy for Lilly. So far she’s been a trooper, with nary a complaint from her, even when it causes some discomfort. I think it helps that she can play games on her ipad while she sits on the potty. I won’t grudge her that playtime; she deserves it.