...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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Thursday, April 7, 2011

3 Days, 3 Doctors, 300+ Miles

Yes, you read correctly. We've been to three different doctors in the last three days. I am glad to see the end of this week peeking around the corner. Here's the quick run-down:

Tuesday, opthomology: still near sighted, vision is stable, no glasses as yet because Jack's whole little world of interest is right in front of his face at this age. Come back in four months.

Wednesday, urology: Good news there. I am very happy to have at long last actually seen my son's penis. Sound weird? Of course it does! But he's almost 17 months old, and until now, his foreskin has had zero inclination to recede. Wednesday must have been the day, because a very funny MD slid it right down and off. This has only been an issue because Jack pees up! The newborn documentation also claims he has an epispadus. Until now, we've had no suggestion otherwise, because we could not see where the opening actually was. He doesn't! His little pee-pee has the opening right where it should be! Yes, I know it's a penis and a urethra...but on my baby, it's a pee-pee! Good news there. No surgery needed to correct the opening! Although, I was kinda hoping for a "medically necessary circumcision." We have some steroid cream to complete the process; come back in a month.

And today, we saw our final doctor for the week. Jack has a new primary. The final straw for Dr Asshat came this week. After the long months of waiting and getting denied at every turn, Regional Center has funded our LVN and she started Monday and we love her! After signing the plan of care and all the orders we've sent to Dr Asshat, he refused to sign the start of care for our LVN. He said it would be fraud. He said he had patients to see. He hung up on me. Bastard!

I like the new doctor. He listened to me and gave his best medical opinion. Nor Jack's LVN or I agree with his assessment that Jack's mental retardation is "moderate to severe" but Jack was sleepy with a full belly and was no where near being up to his usual antics. He's been just a little off his usual self, which I kinda suspect may be a return to of the sinus infection, now that the ten days of Amoxicillan are up, but he's had no fever and just some mild crankiness which could be getting-another-molar related. The doctor only saw us for 15 minutes tops, during which there was much animated discussion while I rocked a sleepy Jack in my arms, so I'll forgive him this one transgression. We disagreed on the nutrition of soy milk versus formula versus Pediasure, but he said he'd research further and that I might be correct. In the meantime, we're to try Jack on Pediasure and see if he tolerates it. As far as I know, it only comes in a milk based version, so we'll start that this weekend and see how it goes with Jack's tummy. Moms ~ please comment with your high calorie, non lactose, nutrition packed alternatives! This doctor sees lots of developmentally disabled children, but Jack's his only little one without a Mickey button. He said he would research lactose free alternatives too, to try the Pediasure in the interum.

And here's the rub. Jack has lost another 2 ounces. he's down to 20 pounds, 2 oounces. No more soy milk for him. The doctor whole heartedly agreed that Jack now needs skilled nursing for the hours when I or The Daddy are not with him. We've been approved for 11 hours a day, 5 days a week. We have a share of cost, but it's still cheaper than the babysitter who doesn't really know when trouble is brewing. Even if it cost twice as much as the sitter...the peaceful feeling I have driving away, knowing he is in good, loving and skilled hands is worth it! The doctor said to have the orders faxed to him, he'd be more than willing to sign them!

And there's the 300+ miles. Two of these days I drove 45 miles to pick up Jack and his nurse, only to drive back 57 miles to the doctor, then 57 miles back to take them home, then 45 miles back to work. Today I had only had to do the 45 mile trips...4 times!

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