Things started off so well. The first specialist we saw was the feeding/speech therapist. She’s the whole reason I wanted A in the clinic—everyone who is anyone (or who is raising anyone) agrees that she is, hands down, the best oral motor/feeding guru around. And impossible to get in to. Our conversation was pretty much like this:
Me: He really needs help. We’ve seen 2 speech therapists with EI, and frankly they’re useless. Our PT/OT is awesome, but I get frustrated spending our PT/OT time doing feeding, because he also needs to learn to crawl and, apparently, pick up a Cheerio and put it in his mouth (before I extract it in horror). (I haven’t blogged about his evaluations yet. I will. Suffice to say: really? Cheerios aren’t going anywhere near his mouth, thankyouverymuch.)
Her: Oh, you see Ms. PT/OT? I love her!
Me: So do we.
Her: Yeah, she’s one of like 3 people who know anything about feeding. I’m pretty picky when it comes to standards of care.
Me: Well, so am I.
Her: Great, well, I’ll refer you to myself and see you twice a month to start, maybe once a week or possibly even once a month, depending on how things go. Come in 3-4 weeks after his palate repair.
And then it was boring: dentists looking at his teeth and telling me his mouth looks fine so far, a social worker asking me if I am getting enough support, and would I like more information about anything, an ENT saying the ear we thought might be clogged is clear, but the other tube might have some dried wax in it, but everything else is fine, etc.
Then our handbasket decided hell seemed like a nice place to visit.
The craniofacial surgeon, Dr. S. He was ‘getting a cup of joe’ and then ‘we have no idea where he is’. Then he walks in and says, “Nice to meet you.” I explained that we’d actually met before, in August or September. He didn’t remember, and I’m not surprised. We waited over an hour for our appointment to see if Mr. A needed a helmet, and he took one look at him, declared him to be at the level of a 3-month-old developmentally (which, really? From a tired, cranky child who’s been waiting, you deduce this in one glance), didn’t even feel his sutures, and said, “He just has an odd head shape, no helmet needed”. He was, hand to God, in the room for less than 30 seconds.
Anyway, he briefly looked in A’s mouth and said his palate was unrepaired (I know) and V-shaped (everyone agrees on that now). He asked me when I would like to fix it. I said it was already scheduled, for March 25th. He got rather upset, and asked how on earth we could have scheduled it without even seeing him. I said his ENT was doing it. He was nonplussed. I guess he assumed he would be repairing it? Why, I have no clue. And it also, frankly, told me that not only did he not read A’s (extensive) medical record, he also didn’t look at our “important notes” section of the intake form, where I listed this very information.
He then asked me when A had last had a sleep study. (In the NICU, probably about a year ago exactly.) He asked me if he snores. (Yes.) He then said:
Well, you really should have one done. He probably has very bad obstructive sleep apnea, and it will get worse after the palate repair. Also, in typical kids with micrognathia, we see catch-up growth with the lower jaw. I don’t think we’re going to see that with your son. In fact, I think that, regardless of what the sleep study shows, you son should get a jaw distraction done before you even consider repairing his palate.
My heart just about stopped. He was shooing us out the door before I could decide whether to cry or not.
Jaw distraction has haunted us, taunted us. I thought, in January, that we had finally closed the door on it entirely.
This is longer than I thought it would be. So, to be continued, I suppose. I’m tired and blogging while I pump, and the well has run dry (in both senses) for the time being.