...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, September 9, 2010

6 Rounds in the Square Ring

Jack was supposed to see the doctor on August 31st, but while I had my cell phone in one ear making plans with a newly discovered fellow Mom to meet for breakfast on September 9th, the doctor's office called on the home phone and change his appointment to September 9th. Dang it! And since I always feel like I'm sparring with the doctor anyway, it just ticked me off.

When we arrived there was a longer than usual wait. The place was hopping with new babies, sick babies, follow up appointment babies. Fortunately, the sick babies wait in an entirely different room. We were finally shown to a room and the doctor came in shortly after.

Jack's stats just 3 days shy of ten months:
17 pounds, 4 ounces (3rd percentile, typical charts)
26.25 inches (1st percentile, typical charts)

The doctor greeted me pleasantly enough and I him. And of course he launched his discussion by trying to scare me into immunizing, once again, by telling me that there are currently 4 pertussis related deaths in babies in our county. I can't remember which childhood disease they were dropping from on our last visit. I think it was polio. It was something that surely would have made the news and yet I was unable to find any "outbreaks" when I researched it. I pretty much ignored him and told him what the cardiologist said and what the EKG showed, and he relayed that they had yet to send a report to him, "But you are educated enough to know what they said and repeat it to me. We will assume that you are correct." When I told him about the cardio's recommendation for urology, the gloves came off. "It is no longer recommended that circumcision be routinely done. It is most often purely for cosmetic reasons, blah, blah, blah..." Right up until he once again examined Jack's package. Yes, just like I've been saying for months and what the cardio echoed, the opening to the foreskin is extremely small, pinpoint in fact, and no, it still cannot be retracted to visualize if there truly is indeed an epispadius. "Well. It looks as though William may need to be circumcised after all." No duh! "And besides, " I chimed in, "he's never going to potty train peeing up into his face!" To that he chuckled. And wrote a referral for urology.
Score so far: Dr M 0, Dr Mom 2
(Extra point awarded for deflected scare tactics.)

Next point of contention. Solids. I was armed with Dr Elaine's very well worded letter outlining Jack's need for a barium swallow study and very explicit directive that he remain on liquid nutrition until one can be achieved, perhaps even afterward depending on how well he advances with arranging and organizing his mouth and tongue to facilitate a greater solids intake. Of course the bottom line in deciding to keep him on formula beyond one year lies solidly with me. However, I needed this "order" to help get child care hours for Jack from Regional Center. I have to prove that he is medically needy. So the doctor ordered continuing formula.
Dr M 0, Dr Mom 3

And he finally wrote a referral for a modified barium swallow study.
Dr M 0, Dr Mom 4

Next up: Simply Thick. "I cannot write a prescription for this. It is available over the counter. The insurance will not pay for it. Where are you getting it now?" So I explained that a fellow Mom in Rockwell, North Carolina (Thanks, Jeanette!) was sending me their excess as her insurance company always shipped three times the quantity her baby needed. "Oh." Next up for discussion was the quantity to request a pre-authorization for. "Fourteen packages a day? That cannot be right. It cannot be fourteen packages a day, surely." Do the math with me. Jack eats, on average, 7 8-ounce bottles in a 24 hour period. Multiply that and then divide by 4 ounces of liquid per package, to equal 14 packages. Am I right? He did it on paper, and then with a calculator, actually left the room to borrow one from the secretary, before he would agree to the sum of the equation. Dang! He's stubborn. I am more so.
So, tally so far:
Dr M 0, Dr Mom 6
(Extra point awarded for the whole multiplication/division/persistence thing because I did it in my head!)

He concluded his examination of Jack by folding him nearly in two and then offering his fingers for Jack to grab. Jack grabbed on and pulled up into what the doctor thought would be a sit, but Jack flexed and extended from sitting into a stand and came to rest at eye level with Dr M and gave him a huge grin and a small satisfied raspberry. To Dr M's credit, his expression registered equal delight and he turned to me with a big smile saying "He's doing so good! He is very strong!" Jack laughed and the doctor laid him back down. So, Dr M, I will let you live to see another miserable day.
Final score:
Dr M 1, Dr Mom 7
(Point awarded for saying something good about my baby; Point awarded to me for producing this awesome boy!)

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