I’ll confess, I was nervous for Namine. Or perhaps because of Namine. Not because I thought she couldn’t do well; on the contrary, I know that Namine is intelligent and capable. She may not be able to walk, but she can move quickly when she needs to. No, I was nervous about this testing because Namine is not always cooperative with strangers, and we had never before met this woman.
A side note. The PT did tell us that she works at CHW as well, and she remembers Namine from just after her first heart surgery, when she was just a tiny little thing. This is good, because that means she knows just how very far Namine has come. As I’ve said before, it’s impossible to know, just by looking at her, how much healthier, how much stronger, how much better she’s doing now – since even just a year ago. So I’m glad that we had someone examining her who knows what she’s had to deal with, in order to get where she is now. But I digress.
As I was saying, Namine doesn’t always cooperate with doctors, nurses, or therapists that she doesn’t know. It’s not that she misbehaves; she just doesn’t listen. It’s like she just disregards the person telling her what to do as unimportant. Namine obeys us because she loves and respects us. She won’t obey someone she doesn’t respect; she expects strangers to cause her pain (the unfortunate result of a lifetime in the hospital), so why should she respect them?
But as usual, Namine proved me wrong. She was perfectly cooperative, happy to demonstrate scooting, crawling, kneeling and standing. We put her braces on and had her walk with her walker for a little bit, and she even did that happily. The PT lady had some fine motor testing under the guise of toys, which Namine took to very quickly (the Sesame Street one in particular; she favored Elmo and Ernie, being somewhat ambivalent towards Oscar, but never Cookie Monster). When the PT switched from fine motor to gross motor, Namine started picking up toys all on her own, without being asked to.
The entire thing only took about an hour or so. (As promised, but we’re skeptical when we’re told something will not take long – can you blame us?) When the PT was finished, she told us a bit about how this whole process works. The PT herself is not the be-all and end-all of approving Namine for therapy; from today’s evaluation, she’ll write a report that will then go to a committee (of course) for discussion and approval. Pending that approval, Namine will then get therapy, probably twice a week. That’s the same number of times per week that she gets now, but she’ll get less time. She’ll likely get no more than a half hour each time, as opposed to the 45 minutes to an hour that she gets now. Ultimately, that’s a good thing; we want Namine to get more time in school, and less in plain ol’ therapy. She’ll get plently of physical activity in school as it is, anyway.
I’m pretty excited about Namine starting school. It seems not so long ago to me that Jessica and I were being assured by doctors that she wouldn’t last long, that she was doomed to a life of poor health – a lifelong trach, a g-tube until the third grade (if not longer), inability to use her legs at all – and all of these would restrict her in such a way that attending a school would be a near impossibility, if she even lived that long.
Of course things are nowhere near resolution. Namine still needs therapy. She is still due for the third heart surgery – the Fontan – and who knows when that will be. (We hope for another year at least, so she can start school, but August’s echocardiogram should reveal more.) There is still potty training to consider – and it remains to be seen how much her plumbing is capable of. Her scoliosis isn’t too bad right now, and her hernia repair doesn’t seem to pull her too much to the left, but these are things we need to be constantly mindful of. Her right wrist seems to have something wrong with it, but her therapists aren’t quite sure what yet. (Hopefully this afternoon’s OT eval helped to reveal something a little more defining than “something isn’t right.”) But she is always learning, always improving herself. Namine’s strength of will is so strong, her determination seemingly unstoppable. There is so much potential, so much possibility in front of her, that I can’t help to be excited to see what the future will bring, to see what my amazing daughter will do.
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