...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




Lilypie Second Birthday tickers
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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Tuesday, August 31, 2010

Tender Young Sweet Potatoes

For a tender young Spud. That's right, The Tater Tot had sweet potatoes today! And the jar says Tender Young Sweet Potatoes.


Meal time starts off with getting Jack set up in his chair. Today I didn't harness him in, just let him try to support himself on his own. He did pretty well, but I did have to bolster his shoulders for a little better head positioning. We start off with 2-3 minutes of the elephant jiggler and then move on to the frozen lemon glycerin swab.

Jack LOVES these swabs and gets very vocal while he chews up and down on them! See that lip closure? That's why we use them!

I tasted the sweet potatoes before I added the rice cereal. They're pretty tasty!

Jack thought so too, and by mid way through the meal he was opening his mouth for the next bite!

What you don't see in the pictures is better revealed in the lack of pictures. There's a whole protocol. After the jiggler and the lemon swab, I swirl the Nuk brush around in his cheeks, under and over his tongue, between his upper and lower lips and the gums. Then we do some lip and cheek tapping with my fingers. And then, he finally gets his first bite after I dart in with the Nuk brush to push his tongue down!

I have always known how to feed a baby. Babies were magical for me since I was just a little girl myself. This whole affair is very new to me, but it certainly is worth it! Jack ate the entire jar of sweet potatoes and about half a jar of bananas. And for a good six hours after every meal, Jack has excellent lip closure no matter what he's doing! Playing. Babbling. Chewing on toys. Lip closure! I've also noticed that since we've started the jiggling, tapping, Nukking...Jack's mouth is almost closed while he sleeps. Yep, it's totally and completely worth swabbing and Nukking his tongue between every bite!
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