·  Spooky is a dryer setting.

jaw distraction

Speech appointment

We had an appointment today with the speech pathologist. (Yes, that one.) It went far better than I expected. In fact, we now have solid evidence that not only is Namine speaking better with the palatal prosthetic in, her speech is improved when she isn’t wearing it.

Rational thought not included

We knew that we would be getting a follow-up call after Namine’s cleft palate clinic appointments. It was expected, if only because we’d already done the same thing six months ago. What we didn’t expect was the utter stupidity accompanying the call.

A second opinion

A couple weeks ago, Namine had an appointment at the cleft palate clinic. But this was no mere checkup. Six months ago, several doctors, pathologists, and other specialists evaluated Namine for mandibular and tongue surgery. They declared that she should be re-evaluated six months later; this was that re-evaluation.

Cleft palate clinic

I can never remember if I’m supposed to refer to Dr. Denny’s team as the “cleft palate team” or just the “palate team.” I imagine it’s the latter, since the good doctor does all sorts or palate work. But since Namine had a cleft palate, that term just sort of stuck with us. At any rate, Namine had a clinic with them yesterday.

The best reason

One of my favorite phrases since becoming a special needs parent (though we don’t think of ourselves like that; we’re just parents taking care of our baby girl) is “I’m not an expert, but I play one in real life.” I’m not sure where I picked it up. Regardless, I love this saying because for me, it underlines the fact that we’re not experts. We didn’t go to school for this; we didn’t train for this; we weren’t prepared for this. But we do it anyway. And we do it for the best of reasons: love.

Happy Mother’s Day

This post could easily be called “a look at our nearly three years of parenthood.” I know some moms who would not share this day with their husbands for their life, but thankfully Jessica is not like that. We both feel that we would not be as good separate. We would not be complete.

Difficulty speaking

Namine speaks in nearly all vowels. For whatever reason, she doesn’t make any plosive sounds. That is, B/D/P/T kind of sounds. She can make Ms, Ns (okay, with a little more difficulty), and Ls. But plosives, she can only seem to make when she plugs her nose. Speech therapy was concerned that it wasn’t just that she wasn’t making those sounds; they thought that perhaps she is incapable of making them. Remember, she’s had a lot of work done on her jaw – the mandibular distraction and the cleft palate repair. (Yeah, it doesn’t sound like a lot. Trust me. It was.) So yesterday Jessica and Namine went to see Dr. Denny, the plastic surgeon who did Namine’s jaw and palate work, to see what he thinks.

Coincidence or providence?

Instead of doing one of those “year in review” posts, I’m going to talk about something else. Often, when we tell Namine’s story, the response is pity of some kind. Another common response is “why?” Why should Namine have to suffer these things? What did she do to deserve such a life? What did we do to cause her such a beginning? Or is she merely the victim of random happenstance, the living evidence of life’s cruel injustices? I suggest a third alternative: Namine did not just happen to take this shape; but she was made this way. To put it perhaps a different way, she was designed, with such precision and deliberation that this is how she was meant to be.

Appointments today

Namine had to get blood drawn and then pay a visit to the endocrine clinic today. I think it’s safe to say that she knows the hospital, and she thinks that it usually means pain. (I wonder where she got that idea.) I suspect she’ll sleep well at nap time.