...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, February 22, 2011

Oy, Soy

So, at Jack's 15 month well baby check, the doctor said, among other things, that he wants Jack to switch entirely to soy milk. Which is quite different than the "extend formula for six more months" he said at his 12 month check up. The problem here is that neither I nor Dr Elaine, Jack's SLP, believe he's taking in enough calories and fat and protein from his spoon food. Yet. Our plan is to alternate Jack's formula bottles with soy milk, thickened, of course, and I started that tonight. He gobbled his first serving of soy milk down like it was pure ambrosia. Do I have to be 70 years old to say things like "pure ambrosia?" cuz I just did. I'm just sayin'... Anyway, Dr Elaine has finally given her blessings on Sonia feeding Jack spoon food independently. And today she did, and she reports he did really well. Since Jack goes back to the pedi in a month, we're going to proceed with our plan and if he doesn't hold his weight and loses any, we'll go back to formula and continue advancing his spoon feeding. Dr Elaine will continue to monitor Sonia's skill at spoon feeding and Jack's willingness to eat. So far, Jack hasn't given her any of the Today I like this but tomorrow I won't, I'll eat all of this cold, some of that warm, none of this at all, and I'll pretend to eat this no matter what temperature you offer it to me and then I'll pocket it all in my adorable little cheeks and give it all back to you all at all once just when you think I've swallowed that last spoonful business that he's given both myself and Dr Elaine.

Sounds like a pretty good plan, right? Here's the hitch. Now that Jack is pending approval for an LVN to care for him, everything that occurs with him, to him, about him, on him, or even thought about anywhere near him has to approved by his doctor, right down to the Desitin smeared upon his little bum, OTC, prn, and all the requisite lingo that goes into a proper order. So if the doctor approves an order for Desitin and I run out and proffer A&D, the LVN cannot apply it to his little cheeks. Same with our plans to alternate soy milk with formula. And you already know how many rounds I've already gone with this doctor. So, wish me luck!
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4 comments:

Becca said...

Just a quick note about soy milk - haven't there been a lot of studies and a lot of publicity lately about how soy milk can alter the hormonal balance in little boys? You may want to check into that first. I know people who have avoided soy for that reason and gone to almond or rice milk... Good luck!!

February 23, 2011 at 4:27 AM
Tracy said...

Hi Becca! Yes there is good reason for all the concern. He's already been on soy formula (Thyroid panels all normal so far!) The problem seems to be with how the soy is grown. A good friend used to raise soy beans, and he said that the pesticide and other crap used to protect the crop went into the ground with the seed, and that's what caused the problems with a sudden uprise in the mass consumption of soy. Much as I hate to admit to buying organic, that's exactly how I'm dealing with the concern...the regular soy milk was $2.99 for half a gallon. I paid $4.49 for my galf gallon of organic at Trader Joes. There is a cheaper non refrigerated organic version too. I bought that as well, but haven't tried it yet. I'll see what he seems to prefer...and hit the local Wal-mart to see if there's a cheaper organic brand he will like! Thanks Becca!

February 23, 2011 at 6:32 AM
Becca said...

Ahhh, that's very interesting! Thanks for the lesson! I thought it was the soy itself, not the pesticides. That's good to know! :-)

February 23, 2011 at 11:17 AM
Holly said...

okay...crazy comment coming...
I read that the soy can make boys have little winkies...is that an urban myth? Just don't want Jackie to have pee pee issues

February 23, 2011 at 5:48 PM

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