Where am I?

Under the fog of sleeplessness, wading through the transition back to work. Luckily, I have been able to make my self super busy. In the past few days, I have completely reorganized my room, re-crafted a literature unit, and built a replica of Harlem circa 1945 in my classroom. Whatever it takes, right?

I miss Penelope so much, so much that it aches. Racing home and snatching her up for a little feeding/ bonding time is getting me through the day.

Loving the middle school schedule right now because I can get home by 3. Not too shabby.

Now it's time for a power nap. Got roughly 2 hours before she eats again. Rest while I can. Blah. Too tired to include subjects in my sentences... will settle for imperatives. Lights out.

(insert loud crashing sound of me falling to the floor)

My Current Favorite Resources- Link Overload!

1. I've recently joined DownSyndrome.com. Looks like it will be a good hub for families and community members to meet and share info. If you are interesting in requesting membership, click here DownSyndrome.com

2. I love a good research site. This one is amazing! Down Syndrome Education Online maintains an academic integrity in their reporting and sharing, and I prefer to read clinical reports in their original format- too much is lost when others summarize. If you are a geek like me, then you'll like this site. Click here to see the most recent additions to their on-line publications.

3. My all-time favorite... ERIC online! You can search for anything education related- just make sure to set your search preferences to include "full journal" if you want to the article (as opposed to scoring it from an outside source). ERIC is great for looking into educational hot topics- behavioral research and applications where I spent most of last summer. Thanks to ERIC, I am a guru on token economies and why I will never use one again.

4. And of course... The National Down Syndrome Society. Got to love the NDSS. Click here to see Miles! (And you can vote for him... for what, I am not sure. But you can certainly "like" it for Fb.)

5. Last but not least, this is a link to a short but sweet article on Translocation. Miles has Translocation 21, 21. I might have mentioned this in the past, but our geneticist, Dr. Proud, wrote the article.

As you read it, you might wonder if either Jesse and I are carriers. As far as we know, neither of us are carriers- so we have an "unbalanced" situation. Shortly after Miles's diagnosis, we all had our karotypes completed. Some day I have frame them all and entitle it, "The World's Most Exact Family Portrait." Seriously, I've had this thought. I've also thought about outsourcing the project to this company. There is a website for every fancy.

Splish Splash... in a bubble wonder land!

Tomorrow

Tomorrow is my last official day of maternity leave. Wow- this just dawned on me. I know that the date has been slowly creeping up, but life has been to busy for me to dwell on it. And honest to God, I haven't felt sad until I typed that first sentence. Now, I am sitting here- head in hand- feeling awful.

Let me jump back a few years for a moment. Returning to work following my huge leave with Miles (all of spring and summer) was equivalent to learning how to re-breath oxygen independently. He and I were so close for those months, and we had shared to scariest and most stressful times together- not to leave out absolute blissful moments of wonderment and miracles. Caring for him had become such a natural extension of myself that leaving him every morning for school left me in tears during my daily commute for weeks. With time, the transition, as most typically do, got easier. And by the following year, leaving for work was a piece of cake (except for the fact that I leave before the sun is even awake).

Flip back to this moment, and I am right back in that difficult position. Self-created for sure, but none the less heartbreaking. Every cell in my body is attached to that darling baby girl; we don't go for very long without contact. I think to date the longest we've been apart was 7 hours- and nothing else comes even close to that. We both light up when we greet each other from nap breaks and play sessions. She literally purrs in my arms; I've never heard any other baby make this sound. We giggle, snuggle, tickle, and gaze for hours every day, and it's as if my arms were especially molded for her tiny body- that we were made for each other. For 9 months and then another 12 weeks, we've been inseparable. Literally.

In preparation for my return, I introduced Penelope to the bottle about three weeks ago. Since then my milk supply has been slowly dwindling. Even though she will still latch, I have to supplement all feeding with additional formula. I can no longer make enough milk for her. I'm wondering if even the thought of pumping at work has taken a psychological toll on the situation, but that's just speculation. This in itself has been very upsetting; I would prefer that she exclusively gets breast milk, but that is now beyond my control. Her health is what comes first and foremost, and homegirl likes to eat. From the moment she arrived, Penelope has been wonderful at feeding. She immediately latched following her delivery- just seconds after popping out she knew what to do. Truth be told, she near ate off my nipples in those early days, though thankfully, we were able to develop a fantastic feeding routine (and nipples of steel). This meant the world to me because breast feeding Miles was very difficult and stressful. Anyone who has ever struggled with breastfeeding can attest that feeling- it sucks, hands down, especially when this is a topic ripe for new mommy boastings. Penelope's enthusiasm and receptiveness not only boosted my confidence as a mom and gave me some redemption in my ego department. Furthermore, it only added to our bond. We went from Super Glue to electromagnetic status. Perhaps, dare I say, Super Strings attachment?

Anyways...

I am getting a little too upset to finish this post. I'd much rather spend this time watching her dream than reflecting on how sad I am about going back to work. Besides, we all do what we have to do for our families, right? Isn't that the role of a parent? In my case, I am the sole carrier of our health insurance policy- so there is no wiggle room- my buns are due back on Monday. I just hope both Miles and Penelope will someday know that every hour I spent working, taking classes, commuting, and completing professional development programs, I did for them. Though I am exceedingly proud of my profession and feel very, very, very blessed to have my job, I would instantly opt to stay home if it were feasible. Besides, as we all know, my passion for special education runs very deep; I will always be involved in the community in some fashion or another.

While my very being craves to stay at home with my children, I must spend some of that time away to ensure that we have a home to share together. Once again I am finding myself in awe of the power of parenthood- the pain of sacrifice and the love that keeps you going... even when your motivation is waiting for you in someone else's arms.

Creative Outlet

Though I doubt I'll have time to pick up a paint brush in the near (say decade) future, at least I've snazzy cameras, cute kids, and interesting settings for self-portraits around the house. a

St. Patrick's Day Cuteness

SUPER! Moonlight Drive

Super Moon over the James River

Did you know...

...that Monday was World Down Syndrome Day? March 21, 3/21, Trisomy 21.

Though we didn't do anything extraordinary to mark the occasion, we did live life as we always do. Naps, walk-in trip to Colonial Williamsburg, snacks from the Cheese Shop. Frankly, that seems to be the best way to celebrate- to include Miles in everything we do, to let his abilities (not his inabilities) be our inspiration, to love him as an individual, and to celebrate his daily achievements. Guess every day is World Down Syndrome Day in our house. Chances are that it is the same in yours, too.

Gotta love this kid!

Neck News

All cleared! His neck film came back with fantastic results. This is a huge relief to us all. Now it's time to look into Dream Catchers Therapeutic Riding program. (Click on the colored link in the previous section to learn more.)

My Green Queen

Gearing up for St. Patty's. Wait 'til you see what the kids will be wearing. I am getting giddy just thinking about it! Love a good holiday I do... so much so that it causes me to think in Yoda-Speak. Wait, he's green, too!

Updates All Around

Update on the x-rays- for the most part, Miles did a great job. If brush his teeth is an ordeal, then it goes without saying that keeping him stabilized for a series of neck shots was a feat and a half. Jesse scored yet another gold star for being able to assist the team. So he's gone from OB (helping deliver Penelope) to on-call radiologist. Pretty soon I might have to start coughing up a co-pay when he brings me my morning cup of joe. I wouldn't mind so much; he's awesome.

We will know the results of the "photo shoot" within a few days.

Back to Japan... just minutes ago I learned the news that a third blast was heard at Fukushima and that the evacuation range has now been widened to twelve miles (185,000 people in total). After hearing the news I could no longer put off my donation, so over to the Red Cross I clicked. In a matter of seconds I was able to make a contribution. Click on the organization's name above for a direct link to the donation page if you are considering helping out. I am also looking for an organization that specifically helps young children- diapers, blankets, lovies... if you know of one, please let me know.

Now a quick word on Penelope- she started acid reflux medication over the weekend. I think I mentioned that the cardiologist could see the reflux in action during ladybug's echo. Well, so far we are thinking this medication is helping. She's eating more, and that is critically important because her weight gain had sharply declined over the past three weeks. Now, within three days, she's up half a pound. I don't want to be overly optimistic, but I am desperate for her to get back on the chubby track. She needs to reach 16 pounds by her fourth month, and as of now, that seems very far off. Clearly she takes after Jesse in this department because all I have to do is simply say the word "donut" and I get a new stretch mark. If she were my girl, all of that boobie juice would have gone straight to her tiny thighs. I kid... only to make myself less stressed.

Good night all- I hear the little one stirring.

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.