...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


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Tuesday, September 28, 2010

Crap!

Crap, crap, crap! I can't say it enough!

Yes I promised that I'd post pictures. And I will. Later. But first I must rant. I simply must!

That stupid asshat of a doctor has officially had his 'points' revoked! Yes I am ranting about the alleged swallow study today. It was scheduled for nine am. We were there at 8:45, only to be told that the radiologist was not on premises yet and that there were two other cases before ours. Then the news. There was no swallow study ordered. It was ordered as an esophogram. To see what happens to the liquid after it's in his stomach. Dammit! There are no digestive issues really, we were wanting to know what happens to the food on the way to his stomach. Like for instance, oh, maybe was it winding up say, just for grins and giggles, in his lungs? This doctor has trifled with me for the last time.

Dr Elaine met us at radiology, because, well, she rocks and since she rocks she wanted to be there to see the swallow study for herself. And since the radiologist was late and she had another case that she'd had to leave for before we were finished anyway, she used her time effectively. That's right. She tromped herself right over to the pediatrician's office, Dr Asshat from here on out, to request specifically, a modified barium swallow study. Again. In person this time. And Dr Asshat would not make himself available. So...she rounded up another pediatrician, explained the problem, and he ordered a modified barium swallow study. That Dr Asshat would have to approve.

Despite the fact that Jack's test was scheduled for nine am, and that the place is 20 minutes away, we were still home by ten am. That's even with driving through Jack in the Box for a grilled pastrami sandwich with extra pickles and a large strawberry soda with curly fries for breakfast. Have you tried those grilled delights? They're good! And just what I needed to soothe my ire. And Laurie, the supervisor at radiology promised me that she'd be "All over Dr Asshat like a dog on a bone" to get the approval. Of course she did not call him by his new name.

I was just finishing up the last of this culinary delight with extra pickle sticks (Yes, they call them pickle sticks!) when the phone rang. It was Laurie. She said that yes, Dr Asshat was resistant, but Dr K, the radiologist, and Dr Elaine's input, finally swayed him. The damned swallow study is finally ordered. And now we have to wait for approval from the insurance company. And we can't do it here, or even at either of the hospitals here in town because he's so young. So, a trip to the big children's hospital in Los Angeles is in our future.

Another interesting call came before I had gotten it checked off my list to call "them." Urology called to let us know that Jax Snax will be seen on October 14th. Here in town. At the Urgent Care of all places. It seems that there is an 8 month backlog for pediatric urology, so the doctor is doing extra days where ever he can secure an exam room. So, yeah for Jack's 'junk.' We'll be seeing that doctor sooner rather than later. Our optho appointment isn't until November 9th, in the valley. Again, a back log. I was reading Jen's post about Elijah's eyes and she says something about being pretty sure that Eli wasn't seeing any greater distance than three feet. I'm thinking this is the case for Jackie Boy as well. He always turns to face people of interest, always. But he doesn't "find" them and give the resultant jubilant smile unless the target is within about eight feet. So, while I wish this appointment were sooner rather than later, we do know that Jack can see, so we're trying to wait patiently. And when I say we I mean me. The Beloved is blissfully unaware of most of these appointments until I tell him about them the night before. Or that morning. He stresses too much over stuff he cannot influence. And since the majority of his free time is now happily and noisily being taken up by playing with The Littles, I just let him be happy. It's good for him and it's good for The Littles, and what is good for them is good for me also. I do believe that if Jack requires surgery on his 'parts' I'll wait until about a week before the date to tell The Dear Daddy. We'll have to see. Or maybe I'll just wait until Jack is in recovery.

So there it is. The Swallow Study That Wasn't. Jack sees Dr Asshat November 15th. If he can show me where he ordered a modified barium swallow study and that his orders were not carried out, I will spare his sorry ass for another day. If he cannot, well, I will polish, print and mail the letter I've already begun drafting to the medical director. Like I said, he has trifled with me for the last time.

1 comment:

Jen Currier said...

Good for you Tracy for staying on him!! Jack is lucky to have his bad-ass Mommy advocating for him! Let me know how the Opthamology appointment goes when you get around to it...I'll bet your instincts are right. Meanwhile, I'll keep you posted as to whether or not Elijah actually tolerates the glasses once we get them later this week.