Harlie finally learned how to do something really cool...
She was so happy when she figured it out! (She actually figured it out at speech therapy last week.)
Just in case you don't get why this is just now happening, or why I think it's so cool - she's been breathing through her neck her whole life. So, forcing air out of her mouth had to be learned. It's the PMV (speaking valve) that made the difference (that little purple thing on her trach). The valve allows air IN but not OUT. So she inhales through the trach, and exhales through her mouth and nose.
We've been struggling with her tolerance of the PMV for years. Since she had an upper airway obstruction, breathing out her mouth was impossible. Thus, so was the use of a PMV. And after two jaw reconstructions, we still aren't sure if they worked well enough for her to be decannulated (removal of the trach).
I'm trying not to get my hopes up that the last jaw reconstruction worked. It's been over a year now, and she's tolerating the PMV more than she ever has. She wears it during all her school time and some at home. And when she wants to blow bubbles, she knows she needs to wear the valve, so that's extremely motivating. Maybe one day it will click that talking is pretty darn cool, too.
Here's a video from our dinner the other night...
We are working on self-feeding, too. So, her blowing bubbles and willingly taking her own bite (with Cooper's help and support, of course) in the same 17 second video is crazy awesome! Woohoo! And how cute is Cooper saying "Good girl!"
Does this look like a happy girl or what?
Okay, more later. I have a lot of blogging to do.
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