Some months ago, Namine had an evaluation. Specialists and all manner of experts who must know our daughter than we do ourselves (do you hear me sigh?) met with us and her in order to decide what to do about Namine’s jaw and palate. Namine had already had the jaw distraction and cleft palate repair, but speech therapy was not improving her understandability. Thus, it was decided for therapists, pathologists, doctors, and other intimidating people to gather and decide Namine’s fate.
One consideration was surgery: in order to improve her speech, Namine’s palate could be elongated. (Given what I know about how Namine felt about the jaw distraction, I really don’t like thinking about this.) Another option – although shot down by the ENT department at Children’s Hospital – was to clip the webbing under Namine’s tongue. Namine is tongue-tied, and clipping that would free her tongue to touch the roof of her mouth, and so on. (But given the physical configuration of Namine’s mouth, jaw, and airway, the newly freed tongue would likely collapse into her airway, once again necessitating a trach – or worse, surgery to tie her tongue back down. Is it any surprise, then, that this option was vetoed?)
The other consideration was a prosthesis of some sort to aid Namine in making sounds she was unable to make. But the decision was made to simply wait. Nothing would be done, aside from continuing speech therapy. We’ll wait, they said, and see how Namine does on her own, without aid of surgery or prosthesis. Namine has come far with her speech, far indeed. And yesterday, it was time for a re-evaluation from the (cleft) palate team.
While Dr. Denny is happy that Namine is much more understandable – she no longer talks in vowels, after all – he still believes that Namine would benefit from at least a prosthesis, if not (also) the palate elongation procedure. But he reached the decision that since Namine is still, even now, learning to talk, he feels that waiting another six months to a year would be beneficial. But I should point out, as he did, that there is only so much that speech therapy can accomplish, only so much it can overcome. There will be sounds that Namine, physically limited as her jaw and tongue are, simple will not be able to make. (Good examples are nasal sounds, as well as “S” and “SH” sounds.) When she’s reached that point where speech therapy will no longer be able to help her, it will be then that surgery or prosthesis could complete what therapy could not. But for now, we will continue to wait.
We’re happy that for now, Dr. Denny has decided to let things run their natural course. We’re not opposed to surgery or prosthesis, of course. (How could we be, after having gone through the trach, vent, suction machine, oxygen tanks, humidifier, g-tube, feeding pump, pulseox monitor, and more?) But Namine has not been talking long, and is still learning. We’d prefer to not force her to relearn, at least not this soon. (Besides, with Jessica going through her own stuff, can we please keep the medical crises to one at a time?)
Namine also saw her dentist again. Despite our best efforts, it seems that she has a cavity or two forming. Time to cut back on the juice and sweets. Namine did not, however, care for this stranger trying to stick his hands in her mouth, so she did what is perhaps a natural defense: she tried to bite him, and not just once. (I could not keep from laughing when Jessica told me, so it’s probably a good thing that I wasn’t able to be there.) Part of the problem there is the fact that all the doctors wear white lab coats, by which, of course, Namine has learned to identify people she does not like. The other part is plastic gloves, especially blue ones; the blood lab people wear blue gloves, so to Namine blue gloves mean I am going to hold you down, stab you with sharp objects, and take your blood.
Namine did well during the appointments, but later during lunch she threw up. At this point, we’re kind of used to her nerves reacting badly to a doctor visit, especially one several hours long. (But “used to” does not mean “easy,” and it breaks my heart every time.)
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