...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

Thursday, September 30, 2010

Echocardiogram

I'm worn out after today's adventures, so this will actually be brief! Jack had is 3rd echo today. After both Dr Owen and a sweet intern named Christina examined him, Dr Owen said his murmur sounds more like an ASD than anything else. The echo says not! The PFO persists, and the VSD most certainly is still open, but small. So, where the heck was the oddball murmur coming from? Interesting story. First let me tell all of my fellow nurse friends that Jack does not have any sort of aneurysm in the sense we think of aneurysms. What he has is benign, but also so infrequently seen as to be an oddity. All of the interns were lined up to watch the replay of Jack's heart, trying to hazard guesses as to what they were looking at. Then Dr Owen would let them off the hook by saying they wouldn't see this often. By the time I had Jack fully dressed, I'd seen it enough times to describe it. For the last two interns, after they'd made their guesses, Dr Owen said "Mom?" So I repeated it: You're looking at an aneurysmal vetricular septal defect flap, and pointed out the muscular flap of tissue protrusion that attempted to close the hole with each beat of Jack's heart. Purely esoteric, but interesting.

So we're basically right back where we started. An open PFO that will likely close very soon, and a small VSD that will also close very soon. Not insignificant, but small all the same. And not something they would even consider surgically repairing! Follow up in three months.

Jack weighs 17 pounds 9.5 ounces
He is 26.8 inches long
Head circumference is 17 inches with very poor attempt at accuracy
BP LUE 91/58

The same surly gal did his weight, measure and blood pressure, but today she wasn't about to be charmed into being pleasant to even Jack! Maybe her hemorrhoids were itchier today.

While we were at the cardiologist's office, Dr Asshat called. He said that our insurance would not authorize the barium swallow study; that he'd set us up with their ST services to be evaluated again; there was currently an 8 month wait, that he'd get an urgent referral; that they would have to be the entity to refer us for the swallow eval; and finally that any swallow eval that took place would have to be done at big county in LA because no one here in town will take a baby. Dang. He also said that if I didn't hear from the referral department for our ST appointment within a week, to call him back personally. He even took the time to ask if we'd gotten our urology consult appointment yet. Hmmmmmm. This is new. Maybe the radiologist passed on the earful he heard from Dr Elaine and I both. We'll see.

No comments: