I would have liked a little more notice than this, perhaps, but it’s still nice to know ortho hasn’t completely forgotten about us. We got a call last week saying they wanted to do Namine’s foot surgery (feet surgery? It does encompass both feet) this month, on the 23rd. I guess the opening just became available recently. (They originally wanted to go with the 13th, which was okay with us too, except they didn’t think there was enough operating room time, so they gave us the 23rd date instead.) As I understand it, the 23rd is still a tentative date, as they still need to figure out what time they’ll start operating. The initial time, I think, was 4:30 in the afternoon, but now they’re going with sometime around noon.

Even though Namine only got her trach cap recently, I think it’s done nothing but made her more eager to be rid of all her equipment and crap. She’ll have the cap on when I play outside with her, and she’ll keep it on well after we go inside (because the bugs decide at some point that we must taste delicious). She’s kept it on throughout dinner, and after as well.

Speaking of dinner, she ate a whole ton of food last night. I’m used to Namine eating a lot, now that her palate is fixed and she doesn’t get food stuck up there anymore, but this was ridiculous. I don’t think I’ve ever seen her clean off her tray before, but that’s basically what she did.

One more thing before I wrap up here. You’d think it would be the easiest thing in the world to say, “yes, I want my daughter to have surgery on her feet. After all, she needs it to be able to walk.” It should be, but it’s not. You see, there is a chance – we don’t know the percentage, as the ortho doctor hasn’t told us – that Namine’s feet will regress. There’s a chance that her feet, despite being in casts at first, then braces, will still re-form themselves back to their “clubbed” shape.

First, this makes us ask, what if this happens? Well, then we have the same choice again. Operate, or leave her feet as they are. So, looking ahead, do we want to put her through the pain and misery of being operated on, of having casts and braces, of, well, having pain, simply for something that might not even take? Yes. For two reasons.

Number one: we do not know anything for sure. Our special needs doctor, Dr. Gordon, has told us on more than one occasion that medicine is inexact at best, that we don’t know anything for certain. (That’s never been more true than now.) We don’t know what might happen, and after carefully weighing the risks, we think it’s worth it. And the second reason: Namine has been disregarding what doctors have told us “what would happen” and done her own thing for over two years now. Before she was born, they told us she’d never move her legs. She’d probably be mentally handicapped. (They couldn’t have been more wrong.) She probably wouldn’t live two weeks. (Her second birthday is in two days.) All of her surgeries have gone exceedingly well.

So who knows? Namine might buck the odds. Her feet might regress, and they might not. We don’t even know if her legs will be strong enough to support her, but we believe that Namine at least deserves the chance, the opportunity, to try.

  • You and Jess have had so many difficult choices. I give you credit for always choosing to broaden Namine’s options instead of staying with what is safe and known. Not an easy thing. We’re behind you 100%. Love and prayers to you all.

  • I agree that she always exceeds far above what the Dr.’s expect from her, so you can only hope this one will be the same.