Joint problems are really not something you think about with a two year old. But caudal regression has a greater impact than you’d think. It’s not just her lower body that it affects – that is, her hips, legs and feet – but joints, internal organs, and possibly even skeletal density.
I’ve talked before about how Namine was born with a hernia. (If memory serves me, the second one came about as a result of heart surgery.) Hernias are typically a hole in a muscle wall; my own hernia, for example, which was repaired a few years back, was due to a tear in my abdominal muscle wall. But Namine’s is a whole different case: she doesn’t have a muscle wall, at least on the left side, to contain her intestine. This compounds her digestion issues by squeezing and pinching her intestine, making it harder to… go. This lack of a muscle wall is, unfortunately, caused by the caudal regression.
Other side effects of the CRS that wouldn’t be obvious at first glance are the dislocation of her hips and her lack of kneecaps. Often times, CRS patients also suffer from incontinence, which is why Namine’s peeing on the toilet last week was such a big deal. It might mean she’ll have some manner of control, which is one of those things doctors told us would probably never happen.
But all of that is kind of by-the-way, as far what I wanted to talk about today is concerned. (Boy, I do ramble on, don’t I?) Lately, Namine has been complaining of her elbows hurting. I should back up a bit. She hasn’t really told us that her elbows hurt, because she doesn’t tell us when anything hurts. Anything other than her feet, I mean. But she has taken to having us kiss hurting body parts better. When she pinched her finger in a cabinet, she just held it up and said “Ih!” (Kiss) She’d kiss it herself, and hold it out to us to kiss. She would also so “Ow!” I don’t think that needs translation. I think that’s pretty much universal.
So when Namine scooted up to me when I was putting dinner together the other night, and raised her elbow up to me and asked “Ih, mee,” (Kiss, please) I knew it was bothering her. And, if you think about it, it makes sense. Our arms aren’t built for bearing our weight all the time. That’s why our legs have more muscle and stronger bones, to bear our weight and to be able to take it. But Namine wasn’t built that way. She has to make do with what she has, and she is. But I feel helpless, because I can’t do anything for her hurting elbows except kiss them better.