I have waited for so long to hear Samuel's voice... and he's finally getting a chance to use it! Before the passy muir valve, there was no sound when Samuel laughed, or cried, or tried to tell jokes... but now, even though it's only for short periods of the day, we can hear him!
With a trach, he breathes in and out of the hole in his throat... so no air, except for small leaks, ever comes out of his mouth. Which means, no sounds. The passy muir valve allows him to breathe in through his throat, but not out... it forces him to breathe out through his mouth. Which means, sound!
A big concern of the using the passy muir valve is CO2 retention... I swear, if I never hear those words again (CO2 retention) I would be okay. It's tough to breathe out of your mouth if you've never done it before, and if you're not exhaling fully, there's an even better chance for CO2 to build up then Samuel has already... just because he's Samuel :) But with all of his progress, the passy muir is becoming a part of our every day routine for about 30-60 minutes, 2-3 times per day. YEA!
Samuel is also getting more and more expressive each day... for example, yesterday he threw his first audible temper tantrum... and I loved every minute of it! Not only was he using his voice, but he was using it to show real, firm emotion. For the first time he really cared that I took his toy away (it was bed time, I wasn't just being mean!), and he was not happy about it. I sat there in complete awe as Samuel told me exactly how he felt... I wanted to freeze that moment in my memory. I actually thought about trying to take a picture of it, but I would have had to recreate the same scenario and that did feel mean - ha ha! Get this, when I tried to give him back the toy, he threw it down and pouted for at least another solid minute... go Samuel!
**Note to NICU and PICU friends - it's amazing, his real voice is so much different than his "vent voice"! I can't wait for you to hear it!**
Other tricks (otherwise know as skills) Samuel has learned: winking (it's awesome!), pointing, identifying his tongue and his hair when asked, playing peek-a-boo, smiling when asked, and clapping his hands. Clapping was the first one, and it's great for many reasons. It means he can express audible happiness even without the passy muir, and because he can purposely connect his hands midline, it means he has a great chance at sign language. Every day I think I'm maxed out on amazement... then tomorrow comes and I find out there is no such thing :)
With a trach, he breathes in and out of the hole in his throat... so no air, except for small leaks, ever comes out of his mouth. Which means, no sounds. The passy muir valve allows him to breathe in through his throat, but not out... it forces him to breathe out through his mouth. Which means, sound!
A big concern of the using the passy muir valve is CO2 retention... I swear, if I never hear those words again (CO2 retention) I would be okay. It's tough to breathe out of your mouth if you've never done it before, and if you're not exhaling fully, there's an even better chance for CO2 to build up then Samuel has already... just because he's Samuel :) But with all of his progress, the passy muir is becoming a part of our every day routine for about 30-60 minutes, 2-3 times per day. YEA!
Samuel is also getting more and more expressive each day... for example, yesterday he threw his first audible temper tantrum... and I loved every minute of it! Not only was he using his voice, but he was using it to show real, firm emotion. For the first time he really cared that I took his toy away (it was bed time, I wasn't just being mean!), and he was not happy about it. I sat there in complete awe as Samuel told me exactly how he felt... I wanted to freeze that moment in my memory. I actually thought about trying to take a picture of it, but I would have had to recreate the same scenario and that did feel mean - ha ha! Get this, when I tried to give him back the toy, he threw it down and pouted for at least another solid minute... go Samuel!
**Note to NICU and PICU friends - it's amazing, his real voice is so much different than his "vent voice"! I can't wait for you to hear it!**
Other tricks (otherwise know as skills) Samuel has learned: winking (it's awesome!), pointing, identifying his tongue and his hair when asked, playing peek-a-boo, smiling when asked, and clapping his hands. Clapping was the first one, and it's great for many reasons. It means he can express audible happiness even without the passy muir, and because he can purposely connect his hands midline, it means he has a great chance at sign language. Every day I think I'm maxed out on amazement... then tomorrow comes and I find out there is no such thing :)
Happy Clapping!
These are from early October when Samuel had just discovered his clap :) I think he likes it!Go figure, the first time he really clapped we were sitting in the doctors office waiting for our turn... luckily we were already in a room so only our nurse Stefanie saw my watery eyes. Sheesh!
Oops, a bit off on this one... but I don't think he cares :) Now Samuel loves to clap when he's happy... or to join in on applauding one of his siblings... or even better, to clap with George and Olivia when they are clapping. That's a lot of happy hands!
Direct hit this time!
Direct hit this time! Too funny, what the camera doesn't show is that when he was first learning to clap, Samuel somehow ended up poking himself in the eye with his thumb at the tail end of his clap. By now we have it figured out, but the first days we ended up with quite a few teary, but happy, eyes :)
3 comments:
awesome stuff! so glad you are blogging again. i have missed reading about you, dave and the babies. and i loved your honesty on your last post. i'm sure it's a hard line to walk between wanting and striving for the "normal" but also realizing the "special" needs. i continue to be encouraged by you guys. george, olivia and samuel are very blessed to have some awesome parents:).
Hi Bethany! I haven't looked at your blog in a while but something made me think of Samuel today so I decided to check in and see what's been happening! I had so much fun reading the latest and greatest, but especially loved the post on Samuel's voice. I can only imagine how sweet the music truly was! I am working at High Risk clinic now so hopefully I will see you guys on your next visit! I love seeing how happy Samuel is- makes me feel BURSTING with JOY!
I'm so happy to see how big he's getting and how well he is doing! I know what you mean about hearing the "voice" for the first time. When Olivia finally made a noise, I thought I was imagining it. She rarely talks, but slowly is doing it more and more and I love it even when she gets mad! As a matter of fact, that's when she talks the most. :)
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