...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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Friday, April 2, 2010

OT & SLP & The Dog With Fleas

I wrote to our SC at RC to ask about getting OT and SLP for Jack - er - William. I'd gone rounds with his doctor Tuesday trying to get him to write something on paper so that RC would consider it. If I get a written request from his doctor and RC denies it, then I have a foundation for appeal. I can argue my request and quite possibly win. But this doctor insists that "There is no evidence that SLP before 18 months is of any benefit. And if he is already getting PT that is enough. The RC will determine what he needs." And here I thought that his doctor was supposed to do that? Well - not this particular doctor, no. I argued repeatedly that "The Down syndrome community advocates..." to which he interrupted every time and said, "The Down syndrome community are not the experts. The medical community are the experts!" Oh really. A massive group of people dedicated to finding the best therapies for their children with Down syndrome are not the experts? On what flipping planet??? I argued that there were numerous studies that prove that many of the problems and pathologies of the mouth and structures of the mouth associated with children with Down syndrome are developed during the early months and that every measure should be taken for prevention because extensive therapy later cannot undo the learned behaviors completely, that waiting until William is 18 months old will be like trying to unring the bell. He wouldn't budge. He did say he'd write a referral for Will for their speech clinic, but he doubted they would even consider seeing him before he was 6 months old. Once I got out to the car I noticed that of the four recommendations he wrote, #3 for speech was crossed out. Obliterated from the page. Ass.

#1 was that I start feeding Jack cereal. And it was his answer to the fact that now that Jack has been switched to a soy formula his tummy is much less gassy but now he's constipated. His answer was to feed Jack 1 ounce of diluted fruit juice daily and start cereal. I said that he was unable to hold his head up on his own yet, that I didn't think he could eat anything safely yet. He said "It does not matter that the baby does not hold his head up. Feed him cereal." Yeah...that's going to happen. NOT! He'd asked if I was giving Jack any kind of medication. I told him I was giving him simethicone for his gas, infant simethicone. "Stop that. It is not recommended. There is no proof that it helps with gas. It causes seizures in babies." I also said I was giving him 1/4 of an infant suppository every few days so he could poop. He said, "Stop that. It is not recommended. There is no proof that it helps babies poop." I swear I was waiting for him to say it causes seizures in babies. I said that I only gave him one quarter and that it stimulated his bowel enough that he pooped it out with a rope of stool within seconds. "Feed him cereal." I thought about going down the road of Celiac disease, common with Ds, with the cereal, but why bother? This doctor does not want a mom who knows anything or questions anything. He wants a mom to listen and do what she's told no matter if it flies in the face of good judgement.

#2 on the list was for an opthamology referral. I'd asked him to check Jack's nystagmus 2 months ago. He gave one attempt and gave up. Today he could see it and wrote for a referral. Wow...no arguing required. This guy must be a real peach to work with.

#4 on the list was for cardiology. He was pissed that we hadn't gotten Jack's echocardiogram in January, but I said we didn't have $1,500.00 laying around to pay for it. He said "The baby should have medi-cal because he has Down syndrome." I said that it hadn't been processed yet. He said, "That does not matter. It is your baby. It is your responsibility. You have to find the money." Or what, it will cause seizures in babies? "Maybe you can give it to us?" No - I didn't say that, but I wanted to. This doctor wants to do an echo because he cannot hear a murmur. He wants to be sure that he cannot hear it because there is not a defect so gapingly large that it doesn't create a murmur. I personally do not believe Jack needs his heart poked at. A cardiac defect too large to be heard would certainly show itself in some sort of circulatory compromise with the screaming hissy fit wailing Jack did the whole time the doctor examined him. He was seen by a neonatal cardiologist at birth. He did a Doppler color flow study, an EKG and an echocardiogram. There were a few issues with Jacks heart. The Biggest of the small issues was a VSD. I didn't even know about the other issues until I got Jack's medical records a few days ago. They were too small to mention. The neonatal cardiologist said he also could not appreciate a murmur because it was so small and would likely close within a few days. I said all this to Dr M, but he insists that it gets done. It's a terrible waste of resources. A VSD doesn't suddenly get huge. Especially in the absence of some sort of circulatory compromise. What do I know? I'm just a nurse.

I did tell the doctor that it frustrated the crap out of me that I've done all this research to do what's best for my baby and he just brushes it all aside like so much nonsense. "You are not the expert. Neither is your Down syndrome community." What ever. I did say in a previous post that I would let that dog lie with it's fleas, but I finally felt like venting. Don't even get me started on his views of our with holding immunizations...

What led to all this outpouring of pent up frustration, rage and steam? It was Kimmie's email from RC. She said she'd put the authorizations in today for OT and SLP! He should start those services on April 15th! Yeah Kimmie!

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