I don’t know if this really qualifies as a blog post, as it’s more of just rambling. But I’ve been reading up on Pierre Robin Sequence a bit more lately, in light of Namine’s prosthetic (with which she’s doing superbly well, by the way) as well as the search for comfortable glasses (on which I will write more later).
Anyway, I came across some medical journals that detail mandibular distraction, the very same as Namine had to have back in 2009. There were pictures. I am not faint of heart, and both Jessica and I have dealt with more yucky – and you might even say gory – medical stuff than any normal person could think to encounter in parenthood.
I’ve been reading more than just about jaw distractions. I’ve been reading about the procedure that could be – the tongue-lip adhesion. It is just as scary as it sounds. It’s a last-ditch airway management technique used enough for Pierre Robin Sequence patients to be filed as “common,” and it’s essentially comprised of stitching the tongue to the bottom lip. If Namine’s frenulum were to be clipped and her tongue were to collapse into the back of her throat, they would perform a tongue-lip adhesion. If that were to fail, they would perform a tracheostomy once again.
Sitting here alone – my girls asleep and peaceful – my mind racing with what ifs, can you blame me for checking on my little love again? Can you blame me for – I am not ashamed to say – my tears? The shame, I think, would be if there were no tears. If this all passed by me, striking no chords, tugging no heartstrings. This heartache hurts, but it comes from love.
I pull myself together and remind myself that these things are not so – Namine is breathing peacefully, calmly. Safe. Stronger for all that she’s endured. But as I have recently been reminded by the near-loss of another special needs child, crisis can strike suddenly, so suddenly. Without warning, we could find ourselves in the hospital once again. So I read to prepare myself for what might be.
So many things predicted by the numerous doctors have not come to pass. Mandibular catch-up growth, for example – or rather, the lack thereof. When Namine first had the mandibular distraction, her plastic surgeon informed us that this may not be the last. Strike that: it almost absolutely would not be the last. It is a rare thing, he said, for a distracted lower jaw to grow consistently along with the rest of the head. So far, he has been wrong; Namine is five years old and has a strong jaw. Her catch-up growth has been good.
But the time for the catch-up growth to slow down – or stop altogether – is in the next few years. There are enough cases to argue that Namine will need another distraction by the time she’s in her adolescence. It’s so easy to become complacent, to forget how much she’s been through. And it’s important to remember that for all her strength, she’s fragile. For all her maturity, even at five, she’s still just a child.
But we’ll make sure that her tomorrow is better than her yesterday. No matter what.
Hope for the best. Prepare for the worst.