Namine is doing better and better every day, but she’s not quite 100% yet. She still needs oxygen while she sleeps, and she’s still coughing a little bit during the day. But she’s done with her Tobi meds and oral antibiotic, she’s coughing less, and what little she is coughing, she’s getting mucus out of her stoma. The stoma itself, in its turn, is getting smaller. Not healed yet, but like I say, we’ll get there. A two-year-old open wound is not going to close overnight.

If Namine’s stoma is not totally healed by November, her doctors tell us they’ll suture it closed. That’s good, I think, because it is an open pathway straight to her lungs. As such, it is a more dangerous sourse of sickness and infection than any trachless person can have. I hope she doesn’t need it, though. It appears smaller to me even now, and I’m praying that it closes quickly.

Namine’s appetite, as always, is quite something to behold. We had a roast – I think it was pork? – and green beans, carrots, and mashed potatoes yesterday. Namine ate several beans, a couple carrots, a chunk of meat the size of an adult fist, and probably between a quarter pound and a half pound of mashed potatoes. To give you an idea of how small she is, if you don’t know, Namine’s fist is probably not much bigger than a golf ball. Yes, she’s itty bitty. And yes, she’s our human vaccuum.

She crashed early last night because she didn’t get a nap all day, and the day itself was kind of a hectic one. Around 8:00 or so, she scooted over to me (I was sitting on the floor playing with her) and layed her head down on my leg. I asked her if she was tired. She nodded and I heard a muffled “uh-huh.” So I gave her breathing treatment and medicine and put her to bed about 8:30. It was the first time in a long time that I’d given her meds to her by g-tube, but she was out like a light. I decided it wasn’t worth it to wake her up, just to make her take her meds. Might as well use the damnable thing as long as we have it, I guess. What would you do?

Lately, Namine’s been climbing on everything she can. She’s pretty limited, with her caudal regression, but that doesn’t stop her from stacking her board books and climbing on top of them. One of her favorites is her cat book, which has a button inside that squeaks when you push it. She climbs on top and bounces, so it squeaks repeatedly. This is the height of hilarity to her, and it’s pretty fun to watch, too. She can almost climb into her highchair seat when it’s on the floor, too. Not quite there, but she’s getting close. It has a bump in the middle (to separate the kid’s legs) that she can’t quite get over yet.

I was thinking today that we have less than a month now, until Namine’s foot repair surgery. Ha, “repair.” Call a spade a spade, here. They’re going to break her feet and cast them. They’re hoping that her feet will keep their new shape, and not revert, or regress, or whatever word you want to use. That’s the danger, we’re told, aside from the usual infection risks; that they waited too long, and her feet’s new shape won’t take, and they’ll revert to their original shape.

  • Does she go up the ramp by herself yet?

  • Michele Eiche

    And WHO’s fault is it that her foot surgery has taken so long??? Not YOURS! It’s been ortho’s problem all along. They are just NOT on the ball. Infuriating.