I’m so happy about this update, I’m adding music. Tonight’s soundtrack brought to you by the Thin White Duke, himself.
SOUND:
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!
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Oh such JOY….I know there is more around the corner…..Praising…and continued Prayer….You are all Awesome and Inspiring…….and I am So Delighted to hear this news…….LOVE
YAY¨i can her With my ears
You were his first sounded word: that’s pretty significant. He loves you so much. Just be warned about the weird mustache! 🙂 I can’t promise it wont be there on tuesday. xoxox
how wonderful Maki that you can hear your Dad say your name, as Allison said just in time for you to be back with him, after spending time with your Mum in New Zealand. Wonderful, wonderful moment xx hugs to you, from me, uncle Paul and Aaron and Lewis xx
ps sorry we seem to miss the skyping time with you the last few weeks,i know the connection from New Zealand can sometimes play up, but once you are home maybe we can start to do it again , we would love to hear all about your trips to see your Dad and about school etc , and Lewis wants to tell you about the cottage we stayed in the last week with Nanna and Grandad, which we called the “Hobbit house” , as the ceillings were so low, Grandad, Uncle Paul and Aaron kept bumping their heads on the wooden beams!!xx
Yea Kindred, you go Vernon!! The help from Kindred is a blessing!! 🙂
Thanks sweet Natalie. i got your phone message btw. It was fun to meet Pilar and know that you had met her too. How adorable is she???
So happy to hear his voice!!! Oh Ali I bet you’re thrilled with this one- just when the progress seems slow as mud something like this happens and soon he’ll be talking up a storm – well maybe not a storm as he speaks about as many words as a monk in a week. But sound and words are here!! What’s next…singing? A girl can dream 🙂
you know him so well, Melissa. After all, we met him around the same time. xoxo Loved your voice on the Emmy’s this week. I didn’t watch them, but I caught up afterward. Love you so much. Vernon loves you too…he always has, from day one.
Oh Maki! I’m so happy for you! Wow! Dad can say your name! Just so happy Vernon is on the mend! Thank you God for that dear mans invention! Thank you God for Vernon’s progress!
hi anyone know where my last post went ???
look up a few comments, vanessa. It’s under ‘the Maki’s’ comment.
hi alison i wrote two comments when i got up this morning ..my first was under kirstens ..then i wrote another under yours and maki`s !!(sad face)
I actually like the moustache!
So incredible the progress he’s making so quickly! And that moustache…it’s incredible in its own right!
very exciting…
SO WONDERFUL!!!!!
Wonderful progress! My thoughts and prayers continue daily.
thankyou Debi for thoughts and prayers.