Sticking his neck out, so to speak

We will be headed to CHKD to have Miles's AAI x-ray completed. Don't know how they will get him to hold still. Getting a hair cut last week took me basically standing on my head, singing all of his favorite songs. And even that only allotted time for a two minute trim.

The x-ray is standard procedure for Ds health maintenance, but this doesn't mean I am not getting a little anxious. What- me worry about a medical procedure? As many different specialists we've seen and as many tests I've watched my sweet little boy endure, it never gets easy. And I am fearing tomorrow will be a doozie. Please send us good vibes so that we sail through the session, and more importantly, his film comes out looking trouble-free.

What to say, what to say

Tomorrow is the annual CDR Auction, and we (meaning me) are going to give a little talk during the main auction. I've spent the last few days racking my brain, trying to come up with a good stater or lead-in. In the fall, when I spoke at an event, I completely threw out my notes the moment I hit the podium. Chances are I would do the same thing, so I am inclined to go with the moment and speak from the heart. Regardless, I still need an intro...

However, my brain, eyes, and ears have been hijacked by all of the coverage from Japan- specifically events related to the Fukushima plants. I am checking on international sources, which are proving to be drastically different from US reports, hourly. And my fingers are also flipping the iPod to Twitter updates. The status of those reactors has my undivided attention.

For as long as I can remember, I have been deeply captivated by nuclear energy- from a very young age. I remember seeing blast footage- a clip of a clapboard barn being destroyed in our early atomic experiments, and that imagery is seared in my memory. If I had to guess, the raw power of the footage has haunted me ever since. Then came Chernobyl and the countless National G editions dedicated to it and our reliance on nuclear power. Once again, it was the photos from National G- images from the abandoned Ukrainian village- turned over tables, lonely toys, closed curtains... yet again, pictures haunting me from the past. (Don't even get me started on the Silkwood movie, which I own.) Today, as the events have unfolded, I can't help but see the parallels. I can't even begin to understand the fear that is coursing through the Japanese people.

So I may not know what I am going to say tomorrow, I do know what I going to say tonight. A prayer. A prayer for Japan and its people, for those already lost to the natural disasters, those looking for help, those looking for loved ones, and those aiding in the search and rescue effort. A prayer for those who are working at Fukushima, those already impacted by its damage, and those who are reporting its status from the front line. And a prayer for us all to remain hopeful in light of all of these mounting tragedies.

"In all things it is better to hope than to despair."

-Goethe

My lovely little lady... sigh.

A Two Tiger Kind of Night

Miles is having a two-tiger kind of night- meaning he needed to snuggle with an extra tiger during bedtime. This brings the stuffed animal count up to five: two tigers, a beaver, a frog, and a Big Toe. He needed an extra light on, which we've never done before. And here's the kicker- he wanted to hold my hand. Rarely does he seek out affection of this nature. Typically, I am lucky to get in a quick cheek peck in daily, but loving of this nature (especially initiated by the little tough guy he has become) is quite unique. I think he was super tired tonight, so relaxing has been a bit harder for him. Earlier today he had his blood drawn for the annual thyroid screening. Though he handled the test like a true big boy, Jesse said kiddo did get a bit freaked out near the end of the test. Can you blame him? I have a huge fear of needles, so he comes by this honestly. So this, plus a day packed full of play, may have pushed him over the edge. But he's asleep now- thank goodness.

I too will need two tigers tonight because I am worried about Penelope. Tomorrow I plan on calling our ped. to discuss acid reflux concerns. Ever since the heart screening on Tuesday, Jesse and I are much more aware of this problem; having the cardiologist see reflux evidence during her assessment wasn't lost on our ears. I also want to discuss her slowing in weight gain. She's been hovering in the same range now for over two weeks; I am guessing this is reflux related. While she's eating roughly every three hours, which is right on tracking, the weight just isn't adding up.

Two tigers are also needed because I am wrestling with some serious ghosts of Two Month Appointments Past. (Read this entry as a refresher.) Maybe I am feeling more scared than I care to acknowledge. Maybe I am waiting for the other proverbial shoe to drop. This is exactly when we were met with Miles's Ds diagnosis. Now, as I type this entry, I am holding my breath in fear... waiting to learn of some difficulty, some setback, some new hurdle that my dear Penelope will have to face. I hate being pessimistic, but there are certain life experiences that leave such deep scars that knee jerk reactions and unavoidable triggers are just part of the turf.

Okay, I will "man up" and admit that I do this type of thinking as a self-defense mechanism. Allow me to elaborate- if I think of a possible event (more likely to be a bad experience), then I will be able to think of solutions before the event occurs- but in actuality, this strategy has NEVER worked for me. In my own feeble way, I am trying to protect myself from all of the scary what-if's that lurk in Parent Land. Sidebar- to my parents and your contemporaries, my hat's off to you. Being a parent is by far and beyond the most challenging, soul searching, and albeit, rewarding adventure of my life. In fact, it gives my life a whole new meaning. And the power of the experience is why, at least for me, it can hurt so much, too.

As a parent, I want the best for my children- health and happiness. When one of these goals are in jeopardy, I can't help but kick into super mom mode and look for remedies and solutions. When there isn't an easy fix, like a boo-boo kiss or bedtime handholding session, my heart hurts. Really, really hurts. And my mind begins to wander to that area of the What-Ifs. My main what-if is a variation on the same theme- what if I can't help them?!? Ugh!

To be honest, I already feel 90% better just writing it out. And reader, I hope that I have not put any of my stress onto you. Here, I have written to celebrate, to mourn, to vent, and to heal. This blog is the hub for my emotional cross-hares and puddlings, sappy sobs and fierce hollers. Tonight, I think I just oozed out a pile of painful confusions. Thanks for letting me do that. Now that some of the weight has been lessened, I need to secure two tigers of my own.

(And I will update of Penelope's reflux issues as soon as I learn more. Please wish my ladybug a good night's sleep. It's becoming more obvious that this is not a good time of day for her.)

And the beat goes on!

Quickly- all hearts look great!

YEAH!!!

Miles's patched VSD looks fully healed over- with great tissue growth on top. The stenosis, though still present, has reduced since his last visit, and the doc is convinced it will continue to reduce on its own. Fun fact, there was a repair done to an ASD flap, a tiny stitch or two done during the surgery, that I didn't know about. Apparently it's something they do commonly, as if you just happen to be in the neighborhood... well, that, too, is looking great.

Penelope's ticker and all related parts look fantastic. Doc did detect signs of reflux during the exam- something we need to keep an eye on. Can't say that I am surprised, but I thought this was something that was getting better. Another "hmmmm" moment popped up when the doc plotted Penelope on her growth chart. Yesterday, during her 2 month check-up, Penelope landed in the 40th percentile for weight and height. Today, she measured in the 25th. Hmmm... heart doc said she might wind up in the 5' 2'' to 5' 3'' range. Note- I am ingesting a huge grain of salt right now (and just because I am eating leftover fried rice as I type). I'm forcing myself not to stress over these measurements because there was such a huge variance from one day to the next. Ugh! Measurements are always random with our kids because no one uses the same devices- so this will help ease that worried wrinkle on my forehead, just a tad.

But anyhoo, big news, the hearts are great.

A Label I Like! (Milestones)

Wouldn't it been fun to get paid for taking pictures of your own children? I've got to find a way to make it happen- especially since my maternity leave is nearing an end. And seriously, my kids are stunners!

Less Anxious than I Thought I'd be... (so far)

Miles and Penelope are headed in to see the cardiologist this morning. Jesse and I are big fans of this doc- she's super sharp and very professional. She caught one of Miles' more difficult to see defects- one that even UVA's team disputed until proven during the actual surgery.

Anyways, the doc visits our town once a month (saving us a painful drive to her office)- so we're hopping in today. Miles is having his third post-op follow-up. Penelope is having an initial screening. As of now, I am feeling cool as a cuke, but I am sure once their respective echo's pop up I will tense up. While we've not had any specific cardio concerns for little man- he's growing and has boundless energy- there is a little lingering fear from the summer of '08. Can you blame me? And no murmur has been detected during Penelope's check-ups- though there was never a murmur heard with Miles... granted, Penelope has not been diagnosed with Ds- but her ped. and I both think this is one area we can't "wait and see" in.

I will swing back by later today and post an appointment update. Please keep us in your thoughts today.

Small People (and pug) & Big Fun: Miles Turns 3

Update from the Cute Front: Month 2 of Adorableness

Three years of awesomeness crammed into a single photo!

Happy Birthday beautiful boy! You are my sunshine, obviously.

You are my sunshine
My only sunshine
You make me happy
When skies are grey
You'll never know dear
How much I love you
Please don't take my sunshine away

Since his birthday isn't officially until tomorrow, I will wait to sing that song. Tonight, however, the above will work just fine.