Tuesday, January 22, 2013

Preach it Bubby!

Our little preacher without words is now a preacher with words!  This week he received a Passey Muir valve, or speaking valve, that allows him to make noise much easier than before.  It allows air to enter into his trach but only lets air escape from his nose and mouth, passing through his vocal cords and making the most wonderful little squeaks and squeals you've ever heard.  The first couple of times he wore it he was unimpressed, but later that night he was wiggling and smiling in sheer delight at these wondrous new noises he was creating.

At every little sound the world stops, at least our world does.  And I'm beginning to think he's becoming quite a little ham because we've caught him fake crying more than once just to hear his own voice.  I say to him "Oh Dominic, is that real?" and he stops and gives me one of those big grins, two front teeth sticking out, that is sure to melt even the most hardened man's heart.

It is tough work for him though and he will often protest when it's on too long.  Sad as it may be, it is so good to hear his voice, it's hard to sympathize with his cry out of the sheer sweetness it provides.  Here's a little video for y'all to share in this delightfulness.

In Them,

Monday, January 7, 2013

Dom, the "Holy Roller" and his pup

WooHoo, Dominic is ROLLING!!!!!  And, since we've secretly named his syndrome "Happy Holy Syndrome," he is officially a big time Holy Roller! (For those of you in Texas, surely you get the pun :) What spurred this majorly exciting turn of events?  Our newest addition to the family.  That's right, we're a family of 7 now.  Pick your jaws up off the ground, it's not a new baby (yet... remember we're crazy like that :), but a new puppy.  Let me introduce Blaise Lightening, service-dog-in-training-extraordinaire!

Mike and I, against our best judgement by the way, decided a puppy for the kids would be super fun.  We reluctantly took the plunge and decided a Labradoodle (Lab/Poodle mix) would be perfect since they don't shed much and are hypoallergenic.  Then I saw their price tag (enter here your best sad sound effect).  Off to Craigslist I went to find a random puppy in time for Christmas.  I found about 100 pit bull puppies, tons of $300-$2000 puppies, and a few litters of muts for sale for a small re-homing fee.  The only people who responded had... wait for it... Labradoodles (or so we think, not 100% sure of the daddy, but mom is for sure a poodle).  At pickup we were told his name is Blaze, and since we liked it well enough, we decided to keep it.  Then my friend (who drove an hour to get the dog despite being a cat person) tells me "isn't it amazing they named the dog Blaze, and St. Blasie (whom was a Bishop in the early Church and was martyred) is the patron saint of people with neck ailments."  What!  That's right!  I remembered then we brought Dominic to get his neck blessed on the feast of St. Blaise last year.  Holy moly, the owners named this dog, who was for a child with a trach <<MAJOR neck ailment!>>, Blaze, without any knowledge of St. Blaise or the significance of him.  So we changed the spelling and the rest is history.

And here we are now, with this sweet, furry puppy that immediately took to Dominic as it's litter mate and whom Dominic immediately bonded with.  From the very first instant, Dominic's whole way about him changed.  That day, for the first time ever, he was reaching out to find the dog and stroking it's fur while it slept.  Instantly it was clear, this was not a family pet, this was Dominic's pet.

Then, one day later, Dominic for the first REAL purposeful time ROLLED!  The day after that he rolled 3 rolls in a row.  And he's been rolling ever since.  It's hard work for him so we get less than 10 rolls in a day, but who cares, a roll's a roll!

And... it gets better.  Out of the blue we got hooked up with this amazing, charitable, kind couple whom I was told trains dogs for people with special needs who live only a few minutes away.  As it turns out, they have trained blind guide dogs and other specific service dogs.  They came out to meet us and the puppy and through the course of our conversation it is decided that this puppy will not be a pet, but a service dog for Dominic.  A bit of background: months ago I was researching service dogs but became frustrated and gave up after I found out a child has to be at least 8 even to apply for a service dog and, per a former trainer of dogs for the blind, had to be able to walk.  Well, we are always provided for.  Turns out, we don't have to go find the service dog, he found us!  These wonderful, generous people are going to help us train this puppy into a service dog for Dominic!

All these things don't just happen by chance.  Dominic is still improving in all aspects of his life, and with this new rolling thing he's doing, I have hope that he will keep on keepin'-on.  I have always just been preparing myself for his death, waiting in a sense.  It may sound awful and morbid, but that's how I coped with all he has going on; I was not a "let's look on the bright side" kind of girl.  Now for the first time ever, I don't think he's going to die.  I see him as a toddler, as a young child, as a pre-teen, even as a teenager.  I was never able to see him like this before, I could not see past his baby stage.  It sounds silly, even as I'm writing it, but Blaise has brought something out in him that is new, vibrant, encouraging.  This is going to be a long road to get this puppy where he needs to be, but we are never abandoned, and in this case, in a real, literal sense, God has showed us his everlasting fidelity through this little mut and these two generous service dog trainers who have offered to walk us through this journey.  Praise be to His Holy Name!

Totus tuus

Turn your volume down, this video is loud.  This is the morning he first got the puppy- he immediately was reaching and petting Blaise- something he had never done before :)
Gimme a kiss, Buddy