Namine seems to be doing well. She’s happy, active, and she’s keeping up with her usual appetite.
My dad and I met Jessica, Namine, and my mom at the mall for lunch today. Namine at a pretzel dog, curly fries, half a cookie the size of her face, and she drank a significant portion of my tea. Yeah, I’d say she’s feeling all right, even despite the coughing (which does not seem as frequent today) and mucus (which does not seem as thick and green). Read on for some talk about caudal regression and how it could pertain to Namine’s lack of weight gain. (Disclaimer: I have no medical education, only what I have learned to better care for my daughter; this is purely conjecture at this point.)
GI has been pressing us and pressing us to get Namine to gain weight. She’s growing (when they last measured her, she’d gained another inch or so, I think), but she’s still basically the same weight as she was a year ago. Part of this is due to her intestinal problems; she’ll block up and seem like she’s gaining weight, and then she’ll, um, lose it all. (Okay, I won’t mince words. She poops it all out.) But she eats like crazy. Ever since Namine’s palate was repaired, she’s been eating like she’s making up for lost time. So with all that she’s eating, why isn’t she gaining weight like GI expects her to?
We don’t know. GI doesn’t know. (Sometimes I wonder if they even care, beyond scolding us. The cynical side of me says it’s doubtful.) But today at lunch, seeing Namine scarf down food reminded me again of GI’s desire for her to gain weight and of her seeming inability to. So I was sitting there, thinking out loud, and my mom said something that should have occurred to me all along.
But before I get to that, I want to recap a bit. Namine has caudal regression, also known as sacral agenesis. This means that a person has either an incomplete (doctors will say malformed) or missing tailbone, also called a sacrum. This occurs in the womb; the tailbone is pivotal in the formation of the hips, legs, and feet. Namine’s caudal regression is what caused her club feet, and it also affected her hips and legs. Her legs are severely bowed; the right femur (thigh bone) is shorter than the left, and is curved so much that it resembles a crescent moon. The left is curved as well, although less severely. The caudal regression is also responsible for Namine’s eleventh toe, and eventually GI will have to remove it so she can wear store-bought shoes. There are other, smaller results as well, but most of these would escape any glance save for that of a parent’s loving eyes.
According to statistics, caudal regression occurs to roughly 1 in 25,000 children. It used to be that any child suffering from it would get his or her legs amputated, since it usually results in the immobility in the legs. Namine herself was predicted to be unable to move her legs, one thing among many that she has proven her doctors wrong about. (Yeah, you too, pulmonology. Eat it.) Nowadays, of course, they don’t amputate as often as they used to; it’s only in very extreme cases that they need to cut anything off.
But back to my point. Namine has caudal regression, resulting in her severely smaller lower half. My mom said a great portion of a person’s weight is in their legs. After all, the heaviest bone in the human body is the femur. And when you’re a growing child, your legs are going to grow and gain weight right along with you. But Namine’s legs aren’t going to contribute a whole lot to her weight; if GI is comparing Namine to a normal child’s growth chart (they are), then of course they’re going to be disappointed with her growth pattern.
I need to do some research on this. GI has been comparing Namine’s growth to a normal child’s, and determining her diet accordingly. That won’t work, obviously; we need to find a chart that fits her body type more accurately. (Would a chart fit to a child with dwafism work better? Would it be worth looking into?) I’ll definitely post some links when I have something. Not like anybody else I know has a kid with caudal regression, but still. You never know.
And to any doctors, nurses, and anybody else who has medical education and reads Namine’s blog – if you have anything you think might help, I’d appreciate your feedback. You can contact me on Facebook, Twitter, or by email at peiche (at) gmail.com.