...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 10, 2010

Our New ST!

Today our PT was out of town, but we were very happy to see Beth, our OT in the afternoon! And today, she would be joined later in her visit by Dr ES! Willie had quite a good time showing off for Beth today! He cooed to her, stood up for her, transferred toys for her and held his head up nice and high during tummy time! He even let her hold him in a crawling position while he reached for toys! Yeah Willie!

The minute Dr ES arrived I was immediately at ease. I liked her instantly. And then The Girlie came out of her room and asked, "Do I know you? You look really familiar, like I've seen you before." Dr ES said she looked familiar as well. Turns out Dr ES had visited The Girlie's first school to do evaluations and do ST with students. The fact that The Girlie said, "It's nice to see you again," meant that it had been a positive!

Beth stayed while Dr ES worked with Willie and she continually bragged on his abilities and new skills. Willie was his charming self, of course. When it was time for his bottle Beth pulled out a star shaped oral vibrator/teether and touched it to Willie's lips. At first his expression was "What the heck?" but he was quickly grabbing Beth's hand to shove it into his mouth! He mow'ed on it for quite some time and forgot all about eating! Next up was an elephant shaped oral vibrator and it was an even bigger hit! Plus, the Little Pea-Pod could hold it himself! Beth wound up leaving it for us to use until ours can be shipped! Then it was finally time to get on with that bottle!

Dr ES approved entirely of the feeding position and burping techniques. We stopped Jack in the middle of his bottle to do a little more stimulation with the elephant for 3 minutes, then he sucked his bottle down and I beat a burp out of him! He charmed Beth and Dr ES while we talked "grown up stuff."

And the grown up stuff consisted of me explaining that I felt I knew more than Miss Nervous and that it wasn't until I voiced an opinion or expressed a concern that Miss Nervous returned the following week with printed information and more knowledge on my previous weeks' concerns. Was she researching after the fact? I also wanted her to direct me, not just watch what I was doing, and explain the why of certain activities instead of waiting for me to ask or not. In the end, Miss Nervous will not be back, and Dr ES will take over! Not only that, Tuesdays at 10:00 am are perfect for her! All in all, it was a great session and I will post the pictures Dr ES took when she forwards them to me!
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