I’m so happy about this update, I’m adding music. Tonight’s soundtrack brought to you by the Thin White Duke, himself.
What a lovely surprise today to find that Vernon was able to vocalize a bit. He has been working with his speech therapist, Pilar, this week. (Remember she asked me to write a list of his interests? Apparently I’m the only wife who has ever left her 6 full pages…maybe a bit tmi? Just wanted to be thorough.)
Jen went up with me today, and we were thrilled to tears to hear the most basic soft grunting sounds through his trach. And even better, we were able to meet Pilar and watch her work with him. Among some other recognizable words, he was able to say the kids’ names and even count how many people were in the room at one moment (5). He was relatively chatty for a little while, before tuckering out. Though it is still hard to understand him, Pilar will be helping him learn to speak clearly again over the next months. It is still remarkable to witness so much progress in the course of his first week at Kindred.
Below is a little video of one of his most important first words. You may have to turn it up to hear him…his sound is pretty soft, but it is there. So is a mustache…another unexpected surprise. (I’ve asked them to put an order in to shave it…Vernon will only get to play Magum PI for a day.)
Now onto VISION:
The reason Vernon is finally able to vocalize at all with his trach still in place is due to a little contraption called the Passy-Muir speaking valve. This is a one-way valve which attaches to the outside opening of the tracheostomy tube and allows air to pass into the tracheostomy, but not out through it. It is the turquoise-colored section in the photo below.
I had seen this daily at the last hospital room, in a plastic bag with all the accompanied reading material, just waiting to be used. But Vernon never quite got that far there. In the meantime, I had read the inventor’s statement peeking through the plastic, and was moved and inspired. In a nutshell, David A. Muir, was a very special man who happened to have muscular dystrophy and then became a quadriplegic. At 23, while studying biochemical engineering, he became ventilator dependent. Though he had accepted the other difficulties of his disease, he wanted to give up when he found he could not talk. However, he overcame this by finding a solution over many months. His invention not only helped him speak again, but it has helped countless trach patients over the years.
I hope to remember his story when I am feeling insecure and limited about ANYTHING.
You can read more about the Valve and David’s story here. Totally inspiring!