Namine had a doctor’s appointment earlier this week. We took her in to see Dr. Denny, her plastic surgeon, who looked at her jaw and distractors; he said she’s doing better than he expected. (We get that a lot.) He told us to keep on with the distracting process through Sunday, then to bring her in to see him again. Already early this week we could tell that her jaw was starting to line up better, and it’s very apparent now, being Friday night.

So the good news is that Namine is doing well, overall, with the distraction process. And she doesn’t seem to mind the actual distracting process, which only takes a minute or two in the morning. The bad news is that cleaning the distractors takes longer, and it hurts. Namine has four pin holes in her jaw on each side, and there occurs what Dr. Denny described as a “bathtub effect” – a ring of dead skin can accumulate around where the pin enters the flesh of her jaw, and it needs to be cleaned out. This requires us to push the skin in a bit (she still has some swelling in her face, too) and get as much of that dead skin out as we can. We do this three times on each side: once to wash and scrub with a 50/50 solution of hydrogen peroxide and sterile water, once to rinse with sterile water, and once to dry (sterile Q-tips each time, of course). By the time we get to the fourth cycle, which is merely applying antibiotic ointment to her skin, she is in so much pain that she thinks the fourth time is going to hurt as well.

On the brighter side, she recovers nicely. (She always has!) As soon as distractor cares are done, she’s all smiles and fun again. Thank God we have such a resilient child.

Next week Monday we’re bringing Namine back in to see the plastic surgeon, and sometime after that (same day? different day? I don’t remember) she has to see a specialist, who will determine if and by how much Namine is behind on her development. I remember the last time she had to do something like this. If the kid doesn’t do what the therapist wants immediately, they decide the child obviously cannot do it. I just hope Namine cooperates.

Let me tell you a story before I finish here. Jessica and I (along with our nurse and Namine’s therapists) believed that Namine could not roll over. She has ever-increasing upper body strength, but that’s not enough. She needs to move her legs in coordination in order to completely roll over, and she simply can’t do that yet. But the first time I did distractor cares on Namine, when she was still in the hospital, she rolled over to her side, away from me. I told Jessica, and she responded, “but she can’t roll over.” “I know,” I said, “but that didn’t stop her from doing it.”

So here’s to proving every one of those so-called experts wrong.

  • Michele Eiche

    Just tell her she can’t and she will. That has been her way. She’s way smarter than any of her doctors. They said she wouldn’t live a day, too and 17 months later, just look what she’s accomplished! Love to you all.