...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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Saturday, May 22, 2010

Things That Make You Go "HMMMM"

Okay so I posted the picture of Jack's latest body art, also known as "ink," his souvenir from the midnight dash through darkened streets the the Emergency Department at our local hospital. That was late Wednesday/early Thursday. I dropped off the many scripts we'd acquired by that time on Thursday evening. Our pharmacy delivers, which is waaay cool, especially since we are way out on the outskirts of town. Seriously...there's farm land within shouting distance. We can hear sheep at night when the 4-H club sends their sheep to graze! It's cool. But I digress...

So all day Friday I was on the phone back and forth with the pharmacy, due to the way The Olders new doctor (not!) wrote their refills. The delivery guy was here three times that day, delivering stuff as it got approved for filling by the insurance. At some point during the day, because thanks to The Beloved, I'd actually gotten a few hours sleep, I started wondering, "What in the heck are we supposed to do with the Albuterol MDI the ER doc prescribed for Jack?" My friend Beth echoed the same thought. I've never seen an MDI that is baby-sized, nor any six month old baby, Ds or not, who can take instructions on how to use one. I assumed the pharmacy would help me figure it out. Not! The pharmacy informed me that neither the MDI nor the Spacer were covered by our health plan. I did find out during this phone call that the mouth end of the Spacer is exactly shaped and sized like the MDI, so that the cap from the MDI can be placed conveniently onto the Spacer. For those of you fortunate enough to not know what an MDI is, it means Metered Dose Inhaler. You've probably seen someone out in your travels exhale deeply and then breath into a plastic device with a metal cylinder attached. That's an MDI.

So, this news forced The Dear Daddy and I to get creative. Certainly we are willing to pay the cash for the MDI and the equipment, but toward what end if Jack can't use it? And you know, since Jack had been wheeze-free since our trip to the ER, he promptly developed wheezes not ten minutes after I hung up with the pharmacy. Now I am no stranger to MDI's. I have one sitting on my desk. Same drug. Slightly lower dose than was prescribed for Jack. Not sure why adults get less and babies more. Probably to compensate for drug loss while it travels through the Spacer. I found out from the pharmacy gal that the health plan we just switched from in May and are going back to in June would have paid for all of that stuff, as well as a nebulizer set up designed for babies.

So, with wheezes in hand, errr...on his lap, The Dear Daddy held Jack upright while we timed his inhalations and I tried to depress the cylinder of my MDI in accordance. Jack was a little surprised by the cool burst of "PUFF" shooting up his nostrils, but it worked! Jack doesn't breath through his mouth, so those teensy little nostrils were just going to have to do! It took about 6 depressions to get the prescribed 2 into Jack.

And you can imagine my surprise when this arrived with the last of the script refills for The Middle Little:Apparently the insurance decided to cover the MDI but not the Spacer. That will probably arrive Monday. The Coke can is for size ratio. This is supposed to fit into Jack's mouth for him to inhale the medication.

The next picture is after The Dear Daddy got creative with the fast flow nipples we are no longer using. The blue MDI is shown with the finished product. I'll be able to better direct the flow of the puff towards his nostrils when he inhales, and it turns out to work quite well held about half an inch from Jack's mouth during the only time he does mouth breath - when he cries.
My Poor Little Duck doesn't feel good at all, but at least now he's breathing a little easier.

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