Namine made progress in speech last night. As I was getting her out of her bath, drying her off and trying to get the all-too-hyper child into her pajamas, she said to me through shivers: “Haha, I ole!” (Papa, I’m cold!) Then she made a noise she’s never done intentionally: “Kuh!” I asked her if she was trying to say cold. “Uh huh. Kuh! Ole!” Even after some more practice with the hard C sound, she still separates the consonant from the rest of the word. But that’s okay. She only just learned to make the noise, after all.

Learning to make a new sound may not seem like such a big deal to you. But to me, it’s a sign that Namine can do what her doctors think she needs surgery to do, before she’s ever able to do it on her own. It’s a sign that she may not need more jaw surgery – nothing definite, no, but promising nonetheless. It’s ever more proof that Namine’s will and determination are nothing to scoff; she can do anything she puts her mind to. We hear her making all kinds of consonants she’s not supposed to be able to make when she’s babbling, but that’s not speech. That’s Namine playing with her lips, discovering all the new noises she’s capable of making, now that she’s trach-free. It’s all still very new and wonderful, and we love to listen to her. But this is real progress, with real speech.

My mom has a theory – I think I may have posted about this before, but I can’t remember – and I pretty much agree with it. But first, allow me to elucidate a bit.

Namine’s doctors think that because she’s not making plosive sounds like other two (almost three) year olds, perhaps she is physically incapable of doing so. Due to having Pierre Robin sequence, the back of her throat closes off differently than yours or mine does. (It doesn’t even close off completely, we’re told.) The surgery proposed by her plastic surgeon would further alter the configuration of her jaw, mouth, and throat, so as to allow her throat to close off more completely when she makes consonant sounds. (I say “further” because the jaw distraction and palate repair have already altered the landscape of her jaw and mouth.)

Here’s what we think. Namine couldn’t really talk at all until the trach came out last September, and that includes the ability to babble – just making noise for the sake of noise, experimenting, playing with the sound that comes out of her mouth. So speech-wise, Namine isn’t two, almost three – verbally speaking, she’s only eight months old. (Don’t misunderstand me. I’m not talking about maturity or mental capacity – just knowing what to do when she opens her mouth and sound comes out.) And we’re seeing speech behavior in Namine that you see in normy kids when they’re under a year old, babbling and playing with sound. Anyway, so we think that Namine just needs more time, time to get used to making noise. Give her another year, at least, and she’ll be more intelligible. She’ll figure it out on her own, with no need for more surgery.

Of course, this may be wishful thinking. I know what it is to be in denial, and I recognize that we might be, if only because we have no desire to put Namine through more operations. But it would be one thing if Namine were showing no progress, no desire to speak. But she does, and she is always talking, always learning, always playing with sound. Last night is evidence enough of this.

  • Every time I see her she makes new sounds, whether it’s speech or babbling it’s still new to her. She’s a smart cookie. SHe’ll catch on very soon.

  • I think your absolutely right! Give her some more time. She has always been an expert at proving the doctors wrong, I suspect she will do it again =)

  • Liz

    Give it some time :) She seems like a very determined young lady, and I wouldn’t be surprised if she teaches herself these consonants.