...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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Wednesday, June 2, 2010

Jack's Visit to the Doctor with Pictures!

Jack Snack had his post hospital visit with the neonatologist today. He's the doctor I'd gone rounds with before, but the hospital pediatrician insisted he would be a great advocate for Jack, and I respected her, so we're back to him. He initially said, "So he had pneumonia. You know this was probably pneumococcal pneumonia and it could have been avoided if you'd consent to vaccinate him. Most pneumonias and ear infections are pneumococcal and there's a great decrease in both of these illnesses when parents vaccinate their babies in a timely manner."

So I calmly said, "It also could have been aspiration pneumonia. The radiographs had a pattern consistent with inflammation and infiltration in the right upper lobe." Any seasoned nurse or doctor will look for aspiration with the key words of inflammation, infiltration and right upper lobe. It's a no-brainer. And I had his attention. (Dang I love knowing the jargon!) He examined Jack while I explained about having switched to the other doctor because we'd gotten a notice to choose a group. The doctor we chose was not the one assigned, but we decided to try him out. I explained what I'd told the other doctor about Jack having developed a wet congested cough mid-way through each bottle that persisted for 30 minutes afterward and that I'd asked for a swallow study. By now the doctor has sat down and is actually listening to me instead of reaching for the door. While I dress Jack I explained that the swallow study was denied and the doc had said instead of feeding him 6 ounces every three to four hours, feed him 3 ounces every two hours. Now the doc is shaking his head, and said, "That's bad advice." I explained that the nasty cough was progressively getting earlier into each meal and lasting longer after ward. I nearly toppled over when he said, "You might be right about the aspiration. He probably is aspirating or has some GERD and he's aspirating that. But it sounds like aspiration." Yeah. I knew that. Pneumococcal infection would not have been isolated to the right upper lobe.

"So what are you doing now? He looks pretty good and his lungs are clear." So, I explained the slow flow nipple to reduce pooling and keeping him upright for feedings and for 30 minutes afterward with thorough burping. "Keep doing that." I was hoping that he'd write a script for Simply Thick so our plan would cover it, but he said to add cereal to the formula. That wasn't the answer I wanted but I did expect it. He asked if I'd started feeding him solids like he'd recommended at the last visit. I said no, the aspiration issue started shortly after that, then the pneumonia and that "I didn't want to start solids until after I'd spoken to you." Sometimes it doesn't hurt to dirty your nose just a little. So he said to try the cereal in the bottle to thicken it, and start him on solids. "If he still has problems we'll investigate further. Almost all these kids have GERD. Many outgrow it by six months. Let's see how he does." Now I hate that he generalizes Willie as one of "these kids," but I find I am disliking him a little less than I did before. And I have to admit, he didn't say "these kids" with malice. Or even unkindly. And he looked at Willie when he said it. That helps.

Having switched groups I had to make sure Willie could still see the cardiologist for a 6 week follow up, and the neurologic opthamologist on June 15th. He said yes. I completely forgot to ask for the nebulizer orders and I had to call his nurse back the next day. The doc got on the phone himself. Yep, disliking him a little less. He said to keep using the MDI and to come by tomorrow and see him and he'd give me an aerochamber with a mask. If that didn't work, he'd investigate a nebulizer.

So then...feast your eyes on the cute pics I got of Billy-Joe-Jim-Bob while we waited for the doctor!

After the doctor's visit and a bottle and didee change, Will was up for some vigorous play!"Moose! I love Mr. Moose!"
"Yummmmy! Moose Rump Roast!"
"Mmmmmm...Moose rib meat!"
Will also likes to pound his Moose on the toy tray!
"Ohhh, I love my Moose!"

And I guess I'll try feeding him solids. A gal from the Ds board on BabyCenter.com mailed out 80 packets of Simply Thick to me today and I should have it within a few days. I won't do the cereal in his bottle. If we have to, we'll pay for the Simply Thick out of pocket.

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