I’m happy to have some good news to share. Jack is working with a speaking valve at last. I know everyone is eager to know just what it was like to hear his voice for the first time since he was a baby.
I invite you to share this moment with us! This video was taken halfway through his first valve trial at daycare with his speech therapist:
Generally, it takes trached children a while to get used to a speaking valve. It feels strange to them to have to force air up through the upper airway, past the vocal cords, to exhale. Their mouths and noses have been relatively unused for months, sometimes years. So, it was a great surprise to me when Jack acted as if nothing was different when we first put the valve on. We’d expected to try to get a five minute trial in. Instead, Jack kept it on – with perfect O2 levels – for 45 minutes! His speech therapists and nurses were thrilled.
Jack’s voice sounded rusty at first, but here’s what he sounded like just 24 hours later:
Now, two weeks after we started, Jack is able to tolerate around 4 hours at a time on his valve, and is beginning to try to make some verbal-ish babble sounds. He says “Daddy” by making the corresponding vowel noises; “Ah-ee!” He’s got a long, long way to go, but I think it’s clear that he understands the concept of speech, and understands that he may be able to obtain it himself.
There is another form of communication that Jack is beginning to really own, also, and that is ASL! He recently started morning preschool at Delaware School for the Deaf (“DSD”), two mornings a week. It took us about 2.5 months to get nursing, transportation, and (most importantly) the Medicaid funding necessary to make this happen. But we are SO, SO glad that it worked out in the end. Nurses N Kids is a great facility, and the therapies that Jack receives there are top-notch. However, it’s not an educational facility, and there aren’t many peers who have similar abilities to Jack in his room at the day care. We felt it was important to find Jack a rich learning environment with other children, and DSD has more than filled that role. The classroom is beautiful, the spoken language teachers are amazing and the deaf teachers / ASL language models are so kind, and so patient (with me as well as my boy), that it’s no surprise that Jack came home with his communication book that the teachers put together, pointed out his language model and showed me how to sign his name!
I hope to write a full entry all about Jack’s experiences at DSD soon.
However, this entry wouldn’t be complete if I didn’t let everyone know that Sam, also, is making some major breakthroughs. Yesterday, he was eating an English muffin pizza for dinner (a favorite), when Jack walked up to his high chair and peeked over the top, trying to get his attention. Sam looked down and very clearly said “No, Jack- I’m eating pizza!” All of a sudden- out of nowhere- these sentences keep pouring out: “Put the lid on it.” “I wanna hold it.” “Jack Jack is under the table.” Also, he seems to have learned his alphabet and can count to eleven:
(For those who find Toddlerish a bit hard to understand, the video picks up with Sam reciting the alphabet at about letter G. After I ask him to start again, he gets to about letter V and then looks out the window and says “Jack Ambulance!” since the ambulance was at that point pulling into the driveway to bring Jack home. He then counts up to eleven with a little prompting from Mom.)
Saying that I’m proud of Sam would be pretty much the understatement of the year. This little dude is curious, empathetic, and willful as all get-out. He’s also excited about Jack’s voice, and he often comments on it. Because we make a big deal out of Jack’s valve whenever it goes on, Sam complains that he wants one too. We try to explain that Sam doesn’t need one because he already can use his voice, but Sam seems puzzled by all of this. I think we finally made a little breakthrough today. We told him that Jack needs the valve so that he can use his voice, but that Sam can always use his voice- which is in his neck. I hummed while Sam held his hand on my throat to feel the vibration, and then he did the same on himself. I have no idea what does and doesn’t compute for a two-year-old, but he seemed satisfied.
There is much more to share, but time is short. I’ll be sure to update soon with more information about Jack’s school and recent doctor visits. As always, thanks for sharing the road with us.