A Big Moment!

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.

Thanks!
Christy

She's full of surprises.

She's been doing great with her eating lately. I can't remember if I mentioned it or not, but we started to introduce pureed fruits again. And surprisingly, she's been very accepting.

So far, we've given her pureed fried apples and peaches.

Every day I'm learning new ways to use her communication device, and how to tailor it to our needs. I changed some of the foods on the food page to be more fitting to her. I removed the burrito, sandwich and salad, for example, and added peaches. As we introduce more variety, I'll add those, too.

I showed her what I added, and showed her she could ask for more peaches. And now she says, "I want more peaches." How great is that?!

Brandy took some peaches to school and Harlie ate all of it. Then asked for more!

And then yesterday, Harlie wanted to feed herself! And - very surprisingly - she did a GREAT job! She didn't spill that much, which is shocking when you think that she's NEVER actually fed herself before. And pureed peaches aren't exactly easy to keep on the spoon.

It's just funny how things go when you have a kid like Harlie. Just a few weeks ago, her feeding therapist said we needed to try and teach her that food is the meal and milk is the beverage to go with the meal (instead of her drinking her entire meal).

And now, just a few weeks later, I can't get her to stop eating the food to drink the beverage (which is where ALL of her calories and nutrition come from). And asking for more food! That's just funny. And so indicative of how erratic life is with her. She's always throwing us for a loop. Sometimes good loops, sometimes bad ones.

I am so, so thankful for the good loops. More thankful than words can say.

Thanks!
~Christy