“Normal” is a funny word. You might think it means one thing – such as the dictionary definition, which is, according to Dictionary.com, “conforming to the standard or the common type; usual; not abnormal; regular; natural” – but that idea can change. The first three definitions there do not describe Namine in the least. Of course there is no one like her. Caudal regression alone only occurs in one out of 25,000 live births, to say nothing of the Pierre Robin sequence or her heart defect.
Namine, being a headstrong and willful child, can be quite, as my sister puts it, ‘tudey. But that attitude, far from being a bad thing, is what has made her so strong. And, of course, she employs her determination in more than just sassing off.
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, don’t click the link.
Yesterday we had a clinic visit with Namine’s ENT doctor, Dr. Sulman. The meeting’s purpose was to talk about the clipping Namine’s frenulum (the webbing under her tongue), since she’s tongue-tied. I think the meeting went rather well.
Namine had a rough night. She woke up a few times screaming, and it took us a while to get her calmed down enough to tell us what was wrong. She finally told me that her back hurt; so I rubbed it for a while, and when she said that it felt better, I laid her back into bed. That was somewhere around 3:30 this morning.
Next week Monday is the first meeting (of many, I fear) to discuss the clipping of Namine’s frenulum (that webbing underneath the tongue). This meeting is solely between us (Jessica and myself) and Namine’s primary ENT doctor. The Special Needs coordinating nurse is still working on getting a meeting involving every doctor set up.
Jessica converted the dining area (which, to be fair, is not all that large in our apartment anyway) into a teaching corner. So, that’s not quite right. It’s more of a nook. She’s got a bulletin board, a magnetic calendar, and a whole bunch of new books. She’s even got next week’s lessons all planned out. She’s in full teaching mode and loving it.