...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


MusicPlaylistView Profile
Create a playlist at MixPod.com

Wednesday, November 17, 2010

Barium Swallow Study

Baby Head was really quite happy to be wrapped up in pillow cases and taped to a Bratt Board! And he was pretty amazed with the table sliding around and the giant x-ray machine received quite a few "pats" as it rotated above him and got close enough to touch.

I think he's either waving to the "camera" or signing "Mama, come see this!"

"Mom! They saw my guts! In here! Right here! Where I'm patting myself! Did you see?"

His little socky feet sticking out just did me in! Too funny!


I don't have the official report yet, but after 1.5 ounces of barium, there was no evidence of reflux. The doctor turned Jack onto both sides and even had him upside down for a time, but there were no significant findings. The doctor said he could continue the study and see if Jack eventually experienced reflux, but that would mean more exposure to radiation, and we could still miss it happening. I tend to think that with so little volume in Jack's belly, we were just missing it anyway. He doesn't eat 1.5 ounces for a meal. On the one hand, a leaking weak sphincter is what it is. On the other hand, wouldn't it be more prone to leak with a greater quantity of volume behind it? If you blow up a latex balloon and then let the air out, there will remain a certain volume of air that is under no pressure to escape. I think this study may have been more revealing if Jack had some actual volume in his stomach. But that would mean he'd have to consume a lot more barium, and be under fluroscopy longer. I truly think that if I'd known they were going to give him so little fluid and allow so little time for him to reflux, I probably would have skipped this procedure altogether.

No comments: