...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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Wednesday, May 13, 2009

Second visit to the PNC

I go to the PNC and first thing I do is a glucose tolerance test. It's awful. It's orange flavored and burns the back of my throat. By the time I sit there for an hour to have my blood drawn, the awful orange goop has given me a raging headache. Then I go out to wait with every one else in the waiting room. I sit there for about another hour this time. Not too bad. I'd sat for much longer waiting to see the very popular doctor who delivered The Oldest. Then they call me in. I pee in a cup. They say my BP is too high. I again show them the pitting edema up to my mid-thigh. I hop on the scale and the gal weighs me. I can't believe what I'm looking at. I step off the scale to be sure I am seeing correctly. I move the weights back to zero myself. It's level. I get back on and start moving the weights and get the same number I had before. I've gained 9 pounds over night. OVERNIGHT! I tell the nurse taking the vitals that I've gained 9 pounds over night. She says that cannot be. She looks for my previous days' weight. She says that maybe the previous days' weight was wrong. She has Dr JF's report with my weight clearly stated. Even if yesterdays weight was wrong, that's still an 18 pound weight gain in 2 weeks. Crap! I'm sent out to the waiting room again until they call me in to see the NP.

Next I see the NP who takes a full and thorough history, again with the whole drawn out explanation of my BP, then a thorough exam. Then I see Dr ER and instantly like him. This whole PHC thing isn't too bad. He finds the baby's' heartbeat and lets me listen, even though the NP already did that. It's 170. He says that if Dr S couldn't find the source of the spotting I'm still having, he doubted that he'd be able to locate it. He goes over my history and really listens to me about my concerns. I really like him. We decide I should have another cervical stitch, just like my other pregnancies, and that he will do the procedure. He has Dr S's report and agrees with the baby aspirin every day and recommends an amniocentesis. He also tells me that the NP heard bilateral carotid bruits, and agrees that I should be on bed rest, if not for that, then the spotting. Then I'm sent out to wait again.

And again I get called in and walked down the hall to see the gal who goes over Dr ER's findings. She gives me a bottle of prenatal vitamins and several lab orders. Dr ER increased my Methyldopa to 500 mg twice a day. I tell her that Dr ER says he'll do my cervical stitch at 16 weeks. She tells me that he hasn't renewed his contract with the PHC so she doubts that he will be the one doing it. Crap!

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