We met today with Dr. Mesrobian, Namine’s urologist, to discuss the results of the tests done a while back. We had a pretty decent idea of what to expect coming into the meeting. I’ll be frank here: we’re talking about potty training here, so if you don’t want to hear the potty talk, stop reading now.
The news has parts both good and bad. The good news is that Namine’s bladder is, physiologically, looking good: it’s smooth and round, and it has low pressure. Namine’s kidneys, too, are nice and healthy. One of the major side effects of caudal regression syndrome (CRS) is, generally speaking, incontinence. Let me divert for a moment to explain.
To be more specific, CRS has an impact on not only the lower limbs – shorter legs and club feet, like Namine has – but also on the internal organs and relative structure. We’ve definitely seen some of that in Namine; her internal organs are not, as one doctor put it, as tightly connected with tissue as a normal child’s would be. One of her hernias, the one that was fixed when she got rid of the g-tube, was the result of the internal muscular structure not being as connected as it should have been. In fact, when the doctor opened her up to close the hernia, she found that all the muscle was already present. It just needed to be connected. (We caught a break there, kids. If the musculature had not been present, and it was assumed that it was not, healing would have been much, much more difficult for Namine.)
Back on track here. So Namine’s bladder and kidneys are looking good. But – and there’s always a “but,” isn’t there? – despite the normally low pressure of her bladder, it cannot hold as much liquid as would a normal child’s. At Namine’s age, a normy’s limit is around five ounces, but Namine starts, um, leaking at three. Whether that’s due to the size of the bladder or some other factor (or factors), the doctor did not say. Whether he himself even knows, I cannot say. But the end result is that Namine, to prevent wetting herself, must go to the bathroom every couple of hours at the minimum. Obviously, that would never work in a normal school environment.
In spite of this, the doctor wants us to get Namine more used to the idea of going to the bathroom regularly. Have her go to the bathroom every two hours, he said, for a month. If she does well, by all means keep up with the same. If not, wait six months and try again. As she grows, her bladder – and its tolerance for pressure with it – will grow. So as she gets older, she’ll be able to hold it longer. However, he said, do not stress the importance of this too much. It is a high-stress thing, potty training, on even the most normal of children. And we do not even know if Namine will be able to do this at all; it’s merely a trial run, to see how she fares.