About two weeks into Evie’s jaw distraction, the sounds of her breathing began changing and we realized she was getting quite a bit more air in and out of her mouth. It sounded awful, actually, like she couldn’t breathe, but we knew it was a very very good sign.
We began wondering if a speaking valve might be a possibility BEFORE the tracheal scarring was fixed and her ENT said that we could do some pressure testing with a valve after her tonsils were out and healed up. That was this last trip. Once she was awake after her scopes, they came down and tested it out. We had to drill two little holes into the speaking valve to relieve some of the pressure, but we got the go ahead!
A speaking valve, or Passy Muir, is a valve that allows a trached individual to breathe IN through the trach, but forces them to breathe OUT of their mouth and nose, thus forcing the air past the vocal cords. Since Evie has a larger trach size and a very small opening at the top of her trachea, she needs those two little holes to allow some of the air to go out the trach still (think about not being able to exhale fully and how scary that would be). At first she didn’t like it AT ALL, but now she wants to wear it all the time!
She’s not quite sure what to do, she hasn’t vocalized in 2.5 years, but she inadvertently does it when she cries and last night we even heard a few laughs when she was romping around with big sister! It’s very quiet since she’s not getting very much air past the vocal cords still, but it’s noise! And she loves it!
I caught it on video last night. It really is the most beautiful sound. Never thought I’d say that I love hearing my child cry, but it’s true right now. I love HEARING her!
Hopefully over the next several weeks and months she’ll figure out how to make more sounds! We’ll keep you updated!