...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, August 26, 2010

Be Still, My Heart

Yes, there are pictures!

So there's nothing quite like happily thinking that your Little Squee has a perfectly good ticker, then finding out differently. I'll cut to the punch. Willie's "pin-point" Ventricular Septal Defect (VSD) ain't so pin point after all. Please excuse the 'ain't' as I've been exposed to many a bad influence lately. Just ax me.

So off we go to Willie's cardiology appointment bright and early this morning. 'They' said our appointment was for 10:30, but that if we wanted to arrive as early as 8:30 we could be seen and sent on our way. Good thing we went early as we were there for a little longer than 3 hours, even though we'd only waited in various waiting rooms for ten minutes at the most.

First up was a pissy medical assistant who by way of greeting told me to put Willie on the scale. I said that his diaper was drenched, did she want me to change him first? "Is it poopy? You gonna have to take him to da bafroom to change him." Having seen the Koala changing table in the 4'X 6' foot bathroom that also housed the toity and the sink in that small space, I asked if she had a liner to put down on the Koala table. She walked away saying nothing but did return to bring me a large sheet of exam-table tissue. Let me tell you, once that Koala table was folded out to a usable position, I was one with the wall. I think they must have installed that thing before the other walls were put up. Either that or it was installed by very skinny workmen! Next up, a naked boy on the baby scale. He promptly pee'd. But just a little. The pissy MA got a chuckle out of that, so maybe she wasn't all that bad. While the ME weighed and measured Jack, I signed papers. I saw his weight. When I asked for his length the MA volunteered his head circumference as well. She tried to get a blood pressure on Jack's leg, but Jack being Jack was not holding still for it. Literally. So after three tries, the MA kinda leaned her body over his legs a little and stroked his furry head, saying "Little Man, you so cute, but you hafta hode still so's I could git your blood pressure. That's right Little Man, you jis hode still for a minute mo and then we be all done." She she was bristly to me, but sweet with Jack.

Next we were taken to an exam room. As the MA left, I asked if I should dress him again or leave him naked with a diaper. Her gaze was steely to me, but softened as her eyes fell on Jack. "It's kinda hot in here. Jis leave him in a tee-shirt." It was less than five minutes before we were seen by Dr Kim, a resident. He introduced himself and said he was going to gather all the preliminary information before the cardiologist came in. I liked him because he listened to me and didn't interrupt every other word out of my mouth. He asked for the details on my pregnancy with Jack and my prenatal care, his immediate post birth info, his length of stay in the NICU, and growth trends, moving on to what and how much Jack eats, his feeding issues, hospitalization, and all the regular baby stuff you'd expect a doctor to want to know. He listened to my frustrations about feeling that Jack's regular doctor turned a deaf ear to my concerns.

He listened to Jack's heart, but again, Jack being Jack, he had a lot to see in this very visually interesting dark haired, light skinned man hovering in his face and would not be quiet! He kept looking from his black hair to his white face and chatted the doctor up quite loudly. When he got to Jack's didee and felt the pulses in his groin I felt comfortable enough to just blurt out "Is that really a 'micro-penis?' " There. I said it. Jack's medical records from birth said he has a micro-penis. "Because I don't really think that qualifies." He checked over Jack's package, all the while shaking his head no. He finally said that he didn't have the stats on what qualifies as a micro-penis, but that he could look them up for me. "I already did," I said. "And this doesn't quite fit, does it?" he asked. Then he chuckled at his own pun. "No, this looks like normal male anatomy to me. A micro-penis is usually quite remarkable in that you just see it. You can't miss that it's very, very small. You know, it's strange phenomena among some doctors that if they have a diagnosis, like Down syndrome, they try to pull out seldom found conditions and dictate little used jargon in their reports. It's like they're trying to brush up while they have the opportunity." Since he was so willing to discuss Jack's 'junk,' I asked him to see if he could determine if Jack truly does have an epispadias, another topic I've been reluctant to blog about my son's parts. He was also unable to manipulate the foreskin enough to determine if he's got one or not. He said to ask for a urology consult from his regular pediatrician.

Then Dr Kim left and came back within a few minutes to say the cardiologist would be in soon. Next up was Dr I'll-never-be-able-to-pronounce-his-name, a fellow, and he discussed Jack's specifics with Dr Kim. He also listened to Jack's ticker. They both agreed that an EKG was in order. I pulled out Jack's bottle thinking that a sleepy full tummied boy would yield a much better EKG than a fully alert squirmy pulling off all the leads boy. Then before I knew it, Dr Owen also arrived in the tiny room. He was a large older man and smelled of a woodsy incense that gave a very comforting and calming ambiance to the room. I liked him.
"Mom. This is a totally bad angle! I'm going to look fat!"

"That's better! Be sure to get my good side! Oh! Wait! All of my sides are good!"

Dr Owen agreed that if Jack had such a gaping cardiac defect that it produced no murmur, he would be symptomatic with very little energy expenditure. "However, I have seen one, and only one, baby with Down syndrome in my entire career who had a huge VSD and was up and active like the wind. But only one!" And after Dr Owen listened to Jack's chest they all agreed that Jack's VSD is at the very least, moderate in size. They were all able to appreciate a murmur, but not of the high squeaky pitched sound that a small defect would produce. No, they heard more of the low thrumming sound of a moderately sized hole. Unfortunately, the echo tech was on vacation. We'd have to return for the echo, but first we were sent to another department for an EKG.

Once in the cardiology department proper, we again sat in the waiting room for less than ten minutes. The gal who called us in cooed over Jack as we walked and several ladies and staff said sweet things about Jack as we walked down a long hallway. The EKG tech got Jack all wired up and ready to go. And Jack was certainly ready to go! All those wires all over him were just too, too tempting not to grab, touch, play with and try to stuff into his mouth! The tech was quite patient with him and stroked his belly and tried yet again to get him to hold still. "This is more fun than a barrel of monkeys!"

Apparently my sleepy full bellied little boy who would hold still for his EKG lives only in my imagination. Finally, as I held Jack in my arms and swayed back and forth, he stared up at me and was starting to give me the sleepy-dreamy look. Success, at last! The gal was kind enough to print a copy of his EKG for me.Jack's tracings

As the EKG tech gingerly peeled the sticky pads off if Jack's skin, I glanced over the EKG findings: ATRIAL FLUTTER/FIBRILLATION, A-RATE 280 CONSIDER LEFT VENTRICULAR HYPERTROPHY. At which my stomach lept into my chest, but a cursory glance at the tracings told me that was not right at all. He had nice regular uniform p-waves, not the bumpy chaotic line seen with atrial fibrillation and certainly not the regular, uniform saw tooth shaped bumps seen in atrial flutter. Each p-wave was followed by a QRS complex, the taller compressed spike. The QRS looked a little wide to me. I said as much to the tech, "This doesn't look anything like a-fib or flutter." She smiled at me and said that she was not allowed to comment, but she smoothed her hand over Jack's belly and said, "But I don't disagree."

Next we went back to the pediatrics department so the MA could sweet talk Jack into holding still for serial blood pressure readings. I chatted her up a bit while she worked and the frost started to thaw. Two of Jack's blood pressures were a little elevated, but not alarmingly so. I asked the MA, "Aren't those two a little high?" To which she said, "Usually Downs babies always be's really low." Well, I wasn't going to educate her on people first verbiage, nor was I going to say anything about her grammar. She was finally regarding me with something just a little less than contempt and she was sweet to my Little Baby Head.

Next in, Dr Kim, the resident. No he did not have A-fib/flutter. As Dr Owen joined him he said there appeared to be some degree of right ventricular conduction delay, evidenced by a slightly widened QRS, which basically means that the electrical impulse that starts in the top chambers of the heart in the right atria was reaching the right ventricle at a slightly lower speed than the left. It was certainly consistent with a moderately sized VSD. Take him home. Treat him like a baby. He's stable. He's a healthy growing boy. Come back in a month for an echocardiogram.

Jack's 9 month stats: 16 pounds, 6 ounces, length 26.4" head circumference 17.3"
Serial blood pressures: 102/39 Left arm 95/52 Right leg 107/56 Left leg

EI with Anna later in the day...

Jack liked the tambourine!

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