...And in the air, the fireflies, our only light in paradise. We'll show the world that they were wrong, and teach them all to sing along; singing Amen I, I'm alive. Amen I, I'm alive...

- Nickelback, If Everyone Cared

For All The Right Reasons Album

And I'm singing Aaa-ayyy-men, I'm alive!

William Leonidas November 12th, 2009
My only regret is that I cried so many tears while I waited for you.

"...I'll try ~ but it's so hard to believe. I'll try ~ but I can't see what you see. I'll try and try to understand the distance between the love I feel ~ the thing I fear ~ and every single dream. I can finally see it. Now I have to believe all those precious stories. All the world is made of faith ~ and trust ~ and pixie dust. So I'll try ~ because I finally believe. I'll try ~ because I can see what you see. I'll try, I'll try ~ to fly..."

Jonatha Brooke "I'll try"

Fear thou not, for I am with thee; be not dismayed, for I am thy God; I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10

Now the word of the Lord came to me saying, "Before I formed you in the womb I knew you, and before you were born I consecrated you..." Jeremiah 1:4-5

For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. Psalms 139:13-14

Monday March 5th, 2010

So Why Stinkerie?

It's simple, really. It's the first thing I whispered against my newborn little Dumpling's temple as I held him alone for that very first time. "There's my Little Stinkerie." And all was right with the world as I brushed my lips across his delicate dewy soft newborn-pink skin and sniffed at his sparse smattering of downy soft hair. Corny and sappy, huh? I can't help it when describing my new Little Puppy. But don't get used to it - I have been told I am "irreverent."

Anyway, it just came out and he's been Stinkerie ever since. As well as Stink Pie, Stink Pot, Stinkey Pete, Little Stinks, Stinks, Puppy, Ducky, Baby, Baby Head, Baby Head Jenkins, Jack, Jack-Jack, Jackie Boy, Jax, Snork, Snorkis, Snorkle, Billy Boy, Billy Bob, Bobby Sue, Billy-Joe-Jim-Bob, Will, Willie, Willister, and the name given by my mentor turned friend Beth - Snake. When I write to her I call him either The Snakester or Slither! And of course, Dumpling, because he is my Little Dumpling - warm and soft and comforting. It's alright to combine comfort food with baby names, right? Have you ever watched the movie Where the Heart Is? If you have, you'll know why I mention this in my defense!

Long story short, you're likely to encounter any one or more of these names in a single post. Because I can. It's my blog!

Something to Consider

Bad decisions make good stories.

Something to Think About

With any pregnancy, there are concerns. With any child, there are worries. When you have a diagnosis of Down syndrome, you know what to worry about. You know what to look for. You have a plan of action. With your typical child, there is no limit to the things that can 'go wrong' or 'happen.' There's no place to focus your worry and concerns. 'IT' will always be out there, waiting. You'll always be on guard. Even when the child is 55 and has grandchildren. With Down syndrome we have a battle plan. With Down syndrome, there is a finite number of things that can go awry. With a typical child, there's isn't. It's a crap shoot. I'm sticking with the Ds and taking the other two back to the hospital for a refund.

Head Above Water

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Monday, September 27, 2010

Feeding Therapy and Swallow Eval Tomorrow

Slow down.

Eeeesh. Feeding therapy always goes well while Dr Elaine is sitting right here with Jack and I. Jack and I. Jack and me. Me and Jack. Which one is proper? I'd been taught the first version, but I've heard it's no longer proper. A teacher actually told me that 'me and Jack' is now considered proper. Is it? I don't know. I'm sticking with Jack and I. Does proper grammar ever really go out of style? I don't know. But there it is.

Anyway, feeding therapy hasn't gone poorly, but it always goes much better when The Good Doc is there with us. And this past Monday, she really motivated me to step up my game and diligently do Jack's feeding therapy three times a day, instead of the one or mostly two times per day I'd been doing it. In my defense for the twice daily thing, Jack isn't really a morning baby. We've done feeding therapy with Dr Elaine in the mornings, and he's been less enthused, less interested, and much quicker to give us cues that he'd just as soon be done with it. His new trend of being bright and chipper and rarin' to go between 8 and 10 am fit nicely into my new resolve.

And that's where things went awry. I've been diligent to jiggle, swab, Nuk, massage, tap, dip, dive and coach Jack's mouth into compliance. If I were looking for success in terms of consumption, I'd give us both all aces. He's certainly consuming about 95% of what I offer. And that would be 4 ounces of veggies, 4 ounces of fruit, and 2.5 ounces of meat. Plus sips of formula. And he enjoys eating. In terms of the tongue thrusting and lip closure, I'd give me a big fat resounding FAIL. And by mid week, while Jack was still enthusiastically interested in eating when we started out each time, he was clearly not enjoying it nearly as much as he had been by midway through.

And with every little incrementally less successful feeding therapy, I became more and more discouraged. Disheartened. Disinterested. By Friday afternoon I was convinced that I was actually hurting his mouth and I stopped mid way through session #2 of the day. I gave him liquid nutrition all weekend, knowing that Monday afternoon would bring The Good Doc, and with it, a lot of instruction and encouragement.

She found the problem before we even got started. Poor Jack. With the very first preparation exercise, it was clear that I've just been moving too fast for him. My determination to do the right thing, to be diligent and dedicated, to really apply myself 100% to what he needed every single session, I'd turned into this focus driven, crazy, wild, frenetic mass of energy and poor Jack was kinda left to sputter in my dust. Poor, poor Baby Head! Dr Elaine said one simple thing. "Slow down." And that made all the difference!

And once again, we had great success! Within the first few bites, Jack was having great lip closure on the spoon, really good mechanics and organizing of the food in his mouth, swallowing and enjoying his meal! And the very, very best part! He showed off his Mr Ma Goo, or Elmer Fudd, impression to Dr Elaine! It could also be called the Toothless Little Old Man impression, but the point is that after swallowing, he repeatedly kept his lips together and his mouth closed. Completely. With his tongue inside! Two of my favorite people from the ART were here today, Miss KH and Miss BC and the noise and praise and celebration going on while we giggled over Jack's success even infected them! At least twice while they were completing paperwork, I glanced over to see them both watching Jack's every bite, enrapt. These gals love My Puppy Pie and they were clearly very pleased with his success too.

I feel like crap on a cracker that I was rushing Jack's oral motor maneuvers to the extent that he wasn't benefiting from the intent. I wasn't rushing to get the exercises done. I know the process takes some time and I always start out with each tool laid out at hand. We progress through each tool with fun and cheery talk and move on to the next in the same amount of time as always. The preparation to eat only takes about eight minutes. What is there to rush? I was just moving too quickly with each individual maneuver inside his mouth. And the more poorly he did, the more determined I became. Poor Jack. I'm really kicking myself over this. I know that if this is the biggest mistake I make in his life, he'll be one lucky kid. What hurts me is that he gets stuff, like any other baby. And I hope he wasn't bewildered by his Mommy. I hope he didn't feel my disappointment, because truly, my frustration was not with him, but rather for my failure to figure out what to do. Jack, your Mommy loves you deeply. She's just stupid sometimes. And she hopes she didn't hurt your mouth.

So tomorrow is our much awaited modified barium swallow study. Nine am. Dr Elaine is coming with us! Wish us luck!

I have new pictures to post...tomorrow.

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