Learning to Speak

If I had to choose between Toby being healed enough to walk or talk, I would choose the latter any day. When any person gets a trach, they lose the ability to talk with their mouth.  The trach bypasses the throat/vocal cords in breathing through the mouth and nose so the vocal cords aren't vibrating to produce sound.  When I made that realization, it was pretty devastating.  There were days when we had to rely on the ventilator alarms or pulse oximeter to let us know when he was upset because the high pressure alarm would go off or his heart rate would be so high from crying that alarm would go off.  Watching your child cry with no sound coming out broke this mama's heart every time.

After Toby began to be able to hold his head up and sit up with some support, we began to teach him sign language.  I just "happened" to come across the Signing Time DVD's at the library, and we were hooked. Rachel Coleman's personal story is one that many mothers of special kids can relate to - I personally connected with her not only because of her daughter Leah, who was born deaf, but also her daughter Lucy, who has Spina Bifida and Cerebral Palsy.  The first video we watched was "My Favorite Things", and at the end of the video there's a song called "Shine". I remember sitting in front of the television with tears running down my face.

Sometimes I see you stuck
For such a long time 
A daily nothing new
Pretend I don’t mind
With lists of things you’ll never do 
Until somehow you do 
And you do — you do — you shine

The days and months and years, 
they run together
Is it just one day? Or is this forever?
You’ve taught me in your lifetime
More than I’d learned in mine 
And you do, you do, you shine

Shine Shine Shine Shine Shine
Shine your light on me
Shine Shine Shine Shine Shine
everyone will see
Shine Shine Shine Shine Shine 
I’m so glad you are mine
And you’ll shine in your own time

Well, maybe I’m too close to see you clearly
Or is it now my role to simply believe?
You’re just one of those mysteries
That may never be solved in time
But you do — you do — you shine

And Sammy will do what Sammy will do when Sammy is ready to do it 
And Trevor will do what Trevor will do when Trevor is ready to do it 
And Lucy will do what Lucy will do when Lucy is ready to do it
And they’ll do it in their own time

This song made me realize that Toby would "shine" in his own way and in his own time.  He was going to pave his own path, and God's plan for Toby was just that - just for Toby. In some ways it took the pressure off.  It didn't matter if he was developing as quickly as his siblings or meeting that list of requirements on the developmental milestone list you get from your pediatrician's office.  Toby is uniquely "Toby" just as Conor, Garrett, and Caris are uniquely themselves, and God's plan for their lives is individual to each of them.  I've also learned that for our family - our main goal is to SHINE the love of Christ to others - so they can know His hope, His love, His plan for their lives, and God was and is doing that through Toby.

So between 20-22 months of age, Toby began to make noise around his trach.  He had a bit of an air leak, which means some air would go over his vocal cords, and he began to babble. We were constantly getting the camera out to take video, and as you can see her - this is what Toby thought of us trying to get him to talk!

Slowly, slowly we began to hear some words.  He said  "baby" and "mama" around 26-27 months - so he was well over two before he really began to "talk".

I remember the first time we had to tell him to "be quiet!"  I never imagined that we would tell him that. I also want to take a moment to thank his speech therapist.  He began working with Miss Jen when he was around 2 1/2 years old; I remember specifically asking our ENT Nurse Practitioner if there was a speech therapist that knew how to work with kids with trachs in teaching them how to talk.  Enter: Miss Jen. She has been working with Toby for almost 6 years now, and he has come so far under her therapy. Another reason he's done so well is his ability to wear a passy-muir valve.  This is a special device that can be used in ventilator tubing or directly on the trach.  It forces the person to move that air up through their mouth and nose.  When he used it in his ventilator tubing, he didn't do very well.  The high pressure from ventilator breaths was too much for him to handle, but once he began to wean from the ventilator, he tolerated the valve really well.

Toby's Grandpa Holt loves to sing and play the piano.  He would come over even and he and Toby would practice singing - even before Toby had the breath support to sing a full sentence.  Now, Toby can sing an entire song, and has the breath support to do so.  His one vocal cord still doesn't move exactly like it should, which causes his singing to be off key at times, but it doesn't matter.  "Make a joyful noise unto the LORD!"
The first time we heard Toby sing "Jesus Loves Me" with Grandpa - there wasn't a dry eye in our house. Enjoy this video also (I wasn't able to put it in the blog - so here's the link to youtube).