I mentioned yesterday that the last big thing is to reschedule Namine’s palate prosthetic fitting. She had the measuring before the Fontan, and had to postpone the fitting due to all the complications involved with Namine’s chest incision from that surgery. But not only did they finally return our calls, they wanted to do it today.
On the way to the appointment, Namine was excited. She didn’t know the details, only that this was something that would go in her mouth and help her to talk better. We didn’t really know all the details either, just some of the specifics: the prosthetic (and I still don’t know if it has an official name, although palatal lift prosthesis seems the best fit) is like a retainer; it hooks onto the omega loops to sit on the roof of her mouth, and it extends further back, in order to help close of the back of her throat.
That’s the whole reason for this prosthetic: Namine’s speech (her plosive consonants in particular) is subject to air leakage because of the shape of her palate and jaw. The solution proposed by the hospital’s speech pathologist was a no-go (as it always will be, you insensitive jerk), so the backup plan was the prosthetic.
As enthusiastic as Namine was about getting the prosthetic, that enthusiasm would not last long. The prosthodontist fit it into Namine’s mouth, and her eyes widened in shock as she started gagging. The doctor quickly took the prosthetic out of Namine’s mouth, telling us that the back was a little too long. She left the room to shorten it up a bit.
She came back a short while later, ready to try again, but Namine knew this time what was in store for her. But after some persuasion (and many promises of toys) she opened her mouth again. The prosthetic fit better this time, but I wouldn’t have known it if the doctor hadn’t said so. Namine gagged again, crying and screaming for us to take it out. But the doctor did nothing. Wait, she said, to see if she tolerates it.
Some children don’t tolerate the prosthetic at all. The reaction, the gag reflex, is sometimes so violent that they can’t have it in for more than a few minutes. They must be eased into it, even as little as a half hour at a time to start with. Namine proved to be made of stronger stuff. After getting over the initial shock of having her gag reflex violated, she did quite well. The prosthodontist asked us several times if we noticed a difference in her speech, to which we readily agreed. We were lying.
I don’t have the years of experience and training that these doctors and pathologists have, so maybe the improvement is there and I’m simply not hearing it. But while I did notice the improved clarity of Namine’s plosive sounds (such as Ps and Bs), I did not hear any difference in her voice. The speech pathologist at the hospital has said for years that Namine’s voice has a distinct nasal quality due to her leaking so much air through her nose, but I’ve never thought so. And I heard no difference once the prosthetic was in place.
The most difficult thing for Namine, at this point, is the saliva. This I could relate to (sort of). Having had a retainer myself when I was young, I know from experience that you salivate more. Your mouth thinks, “There’s something strange in here. It must be food. I know, I’ll make more saliva because we should eat it.” No, silly mouth, don’t eat it. But mouths don’t listen, because they’re mouths.
I thought the paltry amount of salivating I had with a retainer was bad, but Namine has it worse. It’s strange and it feels weird against her tongue; it feels like she’s almost choking every time she makes a back-of-the-mouth consonant or even swallows. It will definitely take some getting used to. One thing’s for sure, though: she did extremely well for her first day of wearing it. We, on the other hand, did less so.
Because we can’t bring the prosthodontist home with us, and they don’t make portable ones, both Jessica and I had to practice putting the prosthetic in and taking it out. We both fumbled a bit, not being seasoned prosthodontists, but we both got it in and out with relatively little crying and without killing our daughter in the process.
After leaving the prosthodontist’s office, Jessica took Namine to the special needs clinic at the hospital. She wanted to make sure that Namine was still getting enough oxygen. Call us funny, but we’re pretty concerned when it comes to important things like breathing. As it turned out, there was no cause for alarm: Namine had a very nice saturation of 96. Couldn’t ask for better.
Jessica ended up taking the prosthetic after about three hours. The saliva build-up was just too much for her to deal with, and swallowing was just not easy enough. But still, not bad for the first time. As far as we’re concerned, there’s no rush to get her wearing it all day. This is hers alone to deal with, and we’re content to let her acclimate to it at her own pace.
This post is part of the timeline: Jaw Expansion – an ongoing story on this site. View the timeline for more context on this post.