Every six months I bring Lilly to Shriner’s Children’s Hospital, in Springfield, Massachusetts, for the spina bifida clinic.
This is a great hospital with wonderful, caring staff. Despite this, the clinic is always a bit overwhelming; after being there for 2-3 hours, I leave the place feeling relieved (it didn’t help that I was sick this time), and somewhat panicky and anxious. There’s always a lot to do, a lot to think about.
At the clinics, you sit in one of the examining rooms, and a parade of specialists each come in, one at a time, making their rounds to each of the families in attendance. We see, in no particular order, a nurse, a pediatrician, a urologist, an orthopedist, a physical therapist, and an occupational therapist. This time, we also talked to another doctor about a new program for child development (cognitive development, school issues, adjustment, etc.).
On this visit we discussed Lilly’s bowel program (or lack of an effective one), and I was given information on what is called a “cone enema”, something that has worked for so many kids in keeping them accident-free, but is, to put it simply, a ton of hard work. I dread it, and yet I know it’s something that I have to do for Lilly’s sake, no matter how much resistance I might get from her. I’m thinking it’s something to start in the summer.
Also for the summer, I need to find a local occupational therapist to help her with her hand strength, and will ask her pediatrician for a recommendation in May. Then there’s the orthotist (the brace specialist) to see in April, and I have a new Rx from the Shriner’s orthopedist for him, as Lilly’s braces are rubbing against the inside of her foot and causing redness and sores. And I have to call Boston Children’s Hospital to make sure they’re okay with her urodynamics (she went there last year for some special tests on her bladder) before Shriner’s will take over that segment again. Oh, and call to make an appointment with a new neurosurgeon in Springfield, to keep an eye on her brain MRI’s (to monitor for hydrocephalus).
I don’t list all these tasks to make people feel sorry for me (that poor dear, she has so much to do!). This is pretty typical stuff, and we’re used to it. Rather, I find that most people, even family members who know about Lilly’s condition, don’t realize how encompassing spina bifida is, how many systems in the body it affects. In fact, if you were to look at Lilly now, you may not even know that anything at all is wrong, unless you notice her slightly lilting gait, the braces on her feet, or the scar on her back. It’s a kind of “invisible disability”, at least for her. If you’re curious to know about the various physical issues it can cause, I created a page that explains them here.
Luckily, Lilly loves going to Shriner’s. Their spacious waiting room has a touch-screen computer game that she likes to play, it has a big playroom with a toy refrigerator and stove, and a kind of game that is illuminated on the floor and is manipulated by your child’s movement. In the examining room, she’s happy to color with crayons between specialists. A far cry from when she was a baby, and she’d scream through the whole appointment!