The Buddy Walk is Coming!

The following was sent to all of our friends and family announcing our upcoming local Buddy Walk! We had a tremendous response last year with barely any prep time. We just know that this year will be incredible!

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Dear Friends and Family,

On Sunday, September 30, 2007, our family will be participating in The Children's Hospital of Philadelphia Buddy Walk and Family Fun Day benefiting the Trisomy 21 Program at CHOP. We are writing to ask for your support of this important event.

The Trisomy 21 Program at CHOP supports individuals with Trisomy 21, or Down Syndrome, and their families and healthcare teams by providing educational material, healthcare collaboration and a comprehensive review of developmental, behavioral, educational, psycho-social and medical issues prevalent in individuals with Trisomy 21.

We became involved in the Buddy Walk in 2006 because of Abby. As part of 'The A Team', we are working together to fund research endeavors and enhanced clinical treatment for Trisomy 21, and we hope you'll join us.

Our team has set a goal of $3,000, and any contribution will help. Please register and join us for the event at http://www.active.com/donate/CHOPBuddyWalk2007/walkforabby or donate towards our team goal! Your gift is tax deductible and will help raise much needed funds for the Trisomy 21 Program at CHOP. We hope that you can come to the event. It is a fun-filled day that is truly inspirational.

We thank you for your support, and look forward to hearing from you or seeing you at the Buddy Walk! If you have any questions, please contact us at walkforabby@comcast.net and certainly pass this information along to others who may be willing to give!

Thank you!

Greg, Megan, AJ and Abby

PS - We ask that you make secure donations online through the link provided above. However, donations are also accepted securely through PayPal (http://www.paypal.com) to walkforabby@comcast.net or via check to our home address (contact us for details).

What's in your iPOD? A Music Meme

OK, admit it. You have some real cheesy songs on your iPOD (or Zune or other MP3 player of your choice). You know, those songs you only sing in the car when you are by yourself or maybe in the shower.

To say that my taste in music is eclectic is quite the understatement. I enjoy music - plain and simple. If it evokes an emotional response in me or if I can relate to the lyrics in some way, it will most likely find its way onto my play lists - no matter the genre. I have songs on my iPOD ranging from hardcore heavy metal to classical. It's not about liking just one style of music, its about gravitating towards a certain rhythm or reminiscing about a song from your childhood. And that can come in many, many forms and styles of music.

So as Anna Nalick sings in 'Breath (2 AM)' -- which is on my iPOD -- "And I feel like I'm naked in front of the crowd / Cause these words are my diary, screaming out loud / And I know that you'll use them, however you want to" -- I challenge you to list the top 5 songs on your MP3 player that you'd simply prefer to keep to yourself lest you reap the harassment of friends and family . . . and why they are on there.

I'll start. Here goes (deep breath) . . .


1. Total Eclipse of the Heart (Bonnie Tyler) - That smokey, raspy voice just conjures up memories of 80's music that I grew up on. Maybe the original "power ballad". I crank this one up to 11.

2. Les Mis Soundtrack - Possibly the best musical ever performed (well, at least for the soundtrack). Do you hear the people sing?


3. Glamorous / Fergalicious / Big Girls Don't Cry (Fergie) - Maybe another 80's connection for me. You remember Stacey Ferguson from "Kids, Inc." don't you? Seriously, how can you top lyrics like "I'll be up in the gym just working on my fitness"? All I can say, is that it's "D to the E to the L-I-C-I-O-U-S!

4. Celestial Soda Pop (Ray Lynch) - Completely new age and totally synthesized, this instrumental has a hauntingly catchy beat. I would nearly wager my next paycheck that no one has ever heard this song, let alone has it on their iPOD.


5. Forever Young (Alphaville) - If you are a bit of a romantic and went to high school in the 80's or 90's, then you are probably familiar with this tune. You maybe even slow-danced to it at a mixer. Ah . . . what fond memories of being rejected by members of the opposite sex!

Now, let the tagging begin. Let's see. Jeff, Nic, and Amy. You're it!

A Day Underground

On Saturday, we wanted to go out and do something different. After Meg nixed the idea of shooting the children with paintball guns, we decided to take a ride out to Crystal Cave in Kutztown, PA (technically it's in Virginville . . . yeah, that sounds like a lot of fun). And despite feeling like we were making a futile trip to Wally World, we actually had a great day.

Founded in 1871, Crystal Cave is the most popular natural structure in Pennsylvania. They offer a 45 minuted guided tour of the cave (which is a pleasant 54 degrees year round!) including an 8 minute movie about formation of the cave and its discovery.

After purchasing our cave tickets ($10.50 for adults, $6.50 for kids 4-11, under 4 is free), we made our way up (and up and up and up) to the entrance of the cave.

Tours run about every 20 minutes, so we had a time to catch our breath a bit at the top and take some pictures.

Once inside, visitors are treated to a magnificent display of nature's awesome work. Some cave formations are created of hundreds of thousands of years. Though but a blink in geologic time, that timescale is nearly inconceivable to us. As oils on our fingers could indefinitely stunt the growth of the stalactites, stalagmites, flow stone, an other nature creations, we are reminded not to touch the interior of the cave - except where and when we are told.

After re-emerging into the hot summer air, we scaled back down to the main facilities where we enjoyed some Amish style fast food (beef and pork bbq and pierogies).

We then tried our hand and "panning" for gem stones and fossils, and AJ walked away with a sizable bag of each. Actually, bags of "loaded" dirt and sand are available in the gift shop in various sizes and prices.

Before leaving Crystal Cave, we had to indulge in one more summer time treat - hand dipped ice cream from Hershey's. Chocolate with rainbow sprinkles for Shane Victorino . . . err . . . AJ, Butter Pecan for Meg, and Denali Moose Tracks for me. Yum. Abby is not so interested in the sweets. Weirdo.

On the way home, we stopped at a farm for some freshly harvested sweet corn. And given the fact that it is quite infrequent that I pass one, we had to make a pit stop at Yocco's Hot Dogs for a Doggie Pac that we thoroughly enjoyed that night for dinner. Double yum!

I've Been Bad. Real Bad.

Friends, it was never my intention to begin this blog and so abruptly abandon it. I truly enjoy blogging, and over the past 2 months have had every intention of doing just that. Life, it seems, gets in the way.

Admittedly, I have spent a vast majority of my personal on-line time working on my store at CafePress.com. I hereby and theretofore promise to balance my time more efficiently between the two endeavors.

Starting today.

For now though, please take a moment to offer a prayer for CJ and ManChild and the heartbreaking scenario that's unfolding before them.

Cole Rodgers

Born on April 29, 2007 to Cathy McMorris- and Brian Rodgers, Cole has been diagnosed with Down Syndrome.

Cole is apparently doing well, and the parents are taking things one day at a time (as they should) as they get over their initial shock.

Oh.

Almost forgot.

Cathy McMorris Rodgers happens to be a Congresswoman from Washington state.

You can read about the story here.

Benefit For Parker!

Please take a moment and visit Tammy and Parker at Praying For Parker.

Tammy is promoting a benefit concert on June 29th at the American Fork Amphitheater in Utah with proceeds to be used for Parker's medical needs and a generous portion of CD sales being donated on Parker's behalf. Singer/songwriter Stephanie Smith is performing and donating her time for this awesome event. Please continue reading below for more information.

From Tammy's blog . . .

You can go here to hear selections from this CD.

CD Prices are $15.98 plus shipping. ($3.00 per CD for shipping.)

Concert Tickets can be purchased for a Suggested Donation of $5.00 per person OR $20.00 per family. This is only a suggested amount. All donations are greatly appreciated.

Please use the “Make a Donation” link in our sidebar, to make your purchase. Please note whether or not you are donating, purchasing CD’s, or purchasing concert tickets.

Thank you.

You will receive an email confirmation for your purchase/s.

My It's Hot

Just a quick, fun post (and a review) of our new Lil' Squirt Baby Pool from One Step Ahead.


First of all, this thing rocks . . . err . . . squirts. At only about $20, this thing is sure to beat the heat. You hook your garden hose up and voila! Once it fills up, you have a few dozen gentle fountains of water, and some stronger ones in the middle. AJ and Abby played in this most of the afternoon -- and that's saying something! Check this out.

Tagged Again!

Nic at All 4 My Gals tagged me a few days ago! I am now supposed to let you know 7 things about myself. OK then. Here goes . . .

1. I love to go camping. There is nothing that I find more relaxing.
2. I'm a science buff.
3. I have 1 brother, but always wanted more siblings (gee thanks, Mom and Dad)!!
4. If I could have any job in the world, I'd either be a commercial airline pilot or a cross-country big-rig truck driver.
5. My favorite movie of all time is The Hunt For Red October. A certain cousin of mine who reads this blog will never have my full respect as she fell asleep in the theater watching this movie. She simply doesn't understand it.
6. My favorite author is Bill Bryson (with Christopher Moore a close second).
7. I'm into way too many reality shows.

Those are good factoids about myself. Looks like the meme has been pretty well distributed, so I'll be boring and just send it over to about-to-be-a-dad-again Jeff at Out With The Kids!

I'm Baaaack!

Wow. It's been a while, huh! How have you been? Doesn't look like too much has changed since I was here last.


So, let's see. Where should I start? Well, as some of you might have noticed, I've been adding to my CafePress store quite regularly. This has been quite addictive, but fun nevertheless.



Last weekend, my brother-in-law got married in Pittsburgh. With such inexpensive flights on Southwest to The Steel City from Philly, we decided to fly. Abby stayed with my parents (with her schedule it wouldn't have been practical to take her with us), and AJ came with us for his first plane ride. Unfortunately, air traffic at the Southwest terminal was heavy.



But once we got in the air, AJ seemed to enjoy himself.





I'm going to save the "Minivan Story Part I & II" for later, but suffice it to say that my father-in-law was shocked to learn how much the repair job was going to cost.

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Now I'm not sure about the bride or groom, but Meg seemed to be getting cold feet.




So Saturday was the big day. AJ was the ring bearer and he had a tough job holding everything together.



Meg and my sister-in-law Lindsay got their drink on well before the ceremony, so they were pretty well toasted by the time we got to the "I do's".



AJ had to be the adult. Again. He wasn't happy.





My mother-in-law and the bride's Mom were nervous. Instead of lighting the two taper candles, they lit the single "Unity Candle". I'm pretty sure these two ladies just married themselves by accident.



By the end of the day, AJ pretty much had enough of the whole ring bearing gig and was ready to crash.

I Promise

One kid is being shipped off to the grandparents for a sleep over. The other hasn't napped all day, so she's going to bed E-A-R-L-Y, so I'm gonna post tonight. Honest!

Happy Blog-versary, OWTK!

Greetings from Cleveland (and fresh from my first Indians game at the Jake), I wanted to be sure to get this post up now as I'll be traveling all day tomorrow. So albeit a few hours early, let me be the first to wish Jeff at Out With The Kids a happy 1 year anniversary in the Blogosphere!

Please be sure to stop by OWTK today and wish Jeff a hardy congratulations. And as if you needed to be encouraged any more to visit, Jeff's blog-party will include numerous contests where well-wishing readers could win prizes and other cool stuff!

Congrats, Jeff!

Some T21 Ink

Meg and I went last Sunday to get some new ink from Billy at Liberty Tattoo. My second, her first. I love tattoos -- always have. I'm a huge Miami Ink fan and I find many tattoos fascinating. Although I admire many of the ones I see, I don't necessarily want them on my body. For example, I may see an amazing rendition of a human skull with a snake crawling through its lifeless eye sockets, but it doesn't mean that I'm going to get one. Likewise, tribal tattoos can have amazingly intricate patterns, but last I checked, I didn't have and Fijian ancestors.

No, any tattoo I have must mean something to me. And the ones we got last week certainly mean something. Down Syndrome Awareness ribbons. Here are some pics. Enjoy.

Revelations - Coming Full Circle

Tonight, after taking his shower and getting his pj's on, AJ, without socks on, reveals to me the following:

AJ: Dad, do you know why I always want to sleep with my socks on?

Me: No, AJ, I don't. Why?

AJ: Because I'm afraid that you or Mommy might sneak into my room at night and try to cut my toenails.

Me: Well, what would you say if I told you that one night, I came into your room with a flashlight and took off your sock and clipped your toenails?

AJ: Ha! No way, Dad. You don't have a flashlight.

Looks like the kid was smarter than me . . . he was wearing socks long before I took up my covert-ops mission!

Mind Flakes Store on Cafepress.com!

You are cordially invited to the grand opening of the Mind Flakes store at Cafepress.com! At our store you will find an assortment of products with unique and original designs. And of course, please make sure you visit the Down Syndrome Awareness section.

More designs and ideas are being added daily (sometimes hourly!), so please be sure to check back often!!

And 2 More Makes 5

Just a quick congratulations to our dear, dear friends in Dallas who welcomed twins into their family last week. Both Hudsen and Tate entered our world healthy and hefty (nice job, Ash!). Here's hoping Mom and Dad are hanging in there with 3 kids under 2 (for another week or so anyway). Oh boy!

And girl!

And another girl!

Oh, and thanks for increasing the Eagles fan population of Dallas by two!

Her Story

I know that it has been a while since I've blogged about Abby's story. I'm having difficulty with the next section. Not emotionally, but strategically within the context of the entire experience. That being said, I've found this exercise to be both therapeutic and emotionally draining, which is why there is normally a bit of time between 'episodes'. And in the interim, I try to blog about one or two light-hearted topics (when someone doesn't throw out the R-word that is). I can normally just feel when it's right to continue. And I'm starting to get that feeling now, but as I've said, I've run into a little touch of writer's block. Be patient, dear readers, it's coming.

I Be A Thogger!

I am honored and humbled (and embarrassed since it's taken me so long to accept this!) to be nominated as a Thogger -- a blogger that makes you think -- by Nicole over at All4MyGals. Nic is the Mom of, you guessed it, 4 beautiful young ladies and her second oldest, Tarenne, has also been blessed with "a little something extra".

These are the rules for this honor:

1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think
2. Link to this post so that people can easily find the exact origin of the meme (see link above)
3. Optional: Proudly display the 'Thinking Blogger Award' with a link to the post that you wrote (here is a silver version or gold ).

So, here we go . . .

1. In the category of "Pretty Sure This Blog Has Never Been Nominated" . . .

Jeff at Out With The Kids

2. In the category of "Not Sure If This Blog Has Ever Been Nominated, But If It Has It Deserves Another" . . .

Tammy and Parker at Praying For Parker

3. In the category of "Already A Thogger, But No Matter Who You Are You Have To Admire Her Strength, Courage, and Faith" . . .

Heather at Especially Heather

4. In the category of "A Blog That Meg Told Me To Nominate" . . .

Cher at Cake For Breakfast

5. And finally, in the category of "Probably Invented The Thinking Blogger Award And Was Nominated In The Post That Nominated Mind Flakes" . . .

Dave Hingsburger at Chewing The Fat

Serendipity

For various reasons, I must remain silent regarding some details of the experience I wish to share with you. Pseudonyms are being used in this story, and if this post seems unusually vague at times, know that there is a reason.

There is always a reason.

Last week, I was unfortunate enough to encounter the "R" word again. Retard. Retarded. The variation matters not. It was uttered by someone who knows better. In fact, it disappointed me quite a bit to know John in particular used this word. I immediately became defensive and formulated in my mind what action I would take. It would have to be addressed.

It was not until the next day that I would be able to do anything about it. And I was pleasantly surprised as someone else approached me before I did. Amy, who I think very highly of and who was familiar with this situation approached me and asked if I had been offended by this. I said that I was, and that I was really very disappointed. Not only that this word had been used, but that it was John that used it. Amy and I talked about it at length.

I'm tempted to say that it would not have been appropriate for me to approach John, but that's not quite it. It's a little more political than that. Amy asked if I wanted her to say something to John and I said yes. I'm positive that she will -- if she hasn't already. Amy will probably fill me in on the conversation, but maybe not. It's fine either way.

I thanked Amy for coming to me about this. It meant a lot. As I walked away from her, I thought about it and felt good. I'm glad that John will realize what he said. I hope he's a little embarrassed. But more than that, I hope he realized the impact of what he said.

And then I saw him. A man that I had never seen before, or if I did, one that I never really paid much attention to.

Wearing a Buddy Walk t-shirt.

I smiled. And as I kept walking, a feeling of pride grew inside me.

And then I realized what I was wearing. A blue shirt and a yellow jacket-vest.

Fate. Karma. Serendipity. Call it anything you'd like. There was something very special in those few moments.

And there's one more thing. As I was doing a Google image search for the term "serendipity", I found the lovely picture that opens this post.

It's of tulips.

I found it on page 21.

Serendipity indeed.

Growing Up, His House Was Like A Museum

Now I'm not saying that I grew up like Cameron Frye, where my house was cold and I couldn't touch anything, but my parents (Mom in particular), appreciate a clean house. It's only because she reads this blog -- thanks, Mom -- that I won't come right out and refer to her as a neat freak. That's much too harsh a term. A neat enthusiast is more appropriate.

But I admire her for that. Honestly, I do. And apparently, AJ is taking note of her ways and offering her quite a bit of encouragement.

The following conversation took place on Tuesday of this week between AJ and Mom-Mom:


Mom-Mom: Don't come in yet AJ 'cause Mom-Mom has to turn off the alarm, okay?

AJ: Okay . . . WOW, oh my gosh!! Do you see this house?? It is soooooo neat. How do you do that? I can't believe it!

Mom-Mom: Well, AJ, when Mom-Mom and Pop-Pop are done with their "things", we always put them away.

AJ: Yeah, but Mom-Mom, I put my things away and it NEVER looks like this! It's amazing!!


Ahhh. What can I say? My house? Not so much. And by the way, AJ doesn't always put his "things" away. The things a 4 year old will try to score some Mom-Mom points. Geez.

Don't Do This - Vol. 1

I consider myself to be a competent parent. After all, recent hospitalizations aside, my kids are still alive and well. I'm still alive too, so that's saying something. That must have been what Darwin meant by survival of the fittest. Come to think of it, I'm pretty sure that I've never been directly or indirectly linked to the demise of another human being.

Those facts therefore give me license to share with you nuggets of wisdom that I have accumulated through experiences which, since they did not kill me, made me stronger.

One night, about 4 years ago, when AJ was just an infant, he and I were playing after dinner. I was laying on the couch and had him aloft over me. He had eaten squash or sweet potatoes, something like that. As an infant, AJ never spit up.

See where this is going?

My mouth open with the joy of playing with my first-born son, I wound up eating squash or sweet potatoes, or something like that.

Fast forward 4 years to yesterday morning. Playing joyfully with my first-born daughter in a similar position, we anxiously awaited the arrival of her nurse with the hospital discharge paperwork.

Gee, she seems a little stuffy. Let me get the bulb suctioner. She hates the bulb suctioner. I love getting snot out of my kids' noses. Sometimes I think I'm close to actually pulling out some grey matter. What can I say? There is something very satisfying about it. And when I squirt the saline up there to loosen that junk, I show no mercy.

So there I was, laying down with Miss Abby sitting on my chest, bulb suctioner firmly up (way up) one nostril. Ahhh. The sound of that suctioner doing its job. It's a delicate technique you know, considering the stringiness of most saline-soaked snot. You need just the right touch to pull the snot from the nose and suck it up into the bulb. It's tricky.

And when things don't go well, you don't want to be laying down with the child sitting on your chest suctioning goop from the deepest part of his or her nasal cavity. As good as you think you are, it's not worth it.

Alas, I didn't have my 'A'-game that fateful morn. And much like I found myself with AJ's dinner in my mouth so long ago, so too did my precious daughter's boogie juice end up in a very bad place. Though she found it delightful to watch Daddy helplessly grasp for a towel, Daddy did not enjoy the experience as much.

And so, as a hunter tries to be downwind from his prey, so must we as parents be mindful of the devastating effects of gravity with respect to matter expelled from our dear, dear children.

Take heart. Take note. And stay dry.

OK, Better Now. Really.

Abby was discharged from the hospital (again) around noon today. She had a great night last night and another good day today.

We are going to try and make this one stick.

And, We're Back

Home, that is. For the first night in the last 4, we are all together. At home!

Abby came home from the hospital this evening. She is still not in the best of moods -- cranky and wants to be held a lot-- but otherwise is doing OK. She is back to just 1 liter of O2 (1 1/2 at night) and holding her own. She'll be on antibiotics for the next few days, but is finished with the steroids (which should have been obvious when she threw the refrigerator across the room).

I doubt I'll be able to stay awake much longer, though I would love to watch LOST tonight. I don't think that's going to happen though, so shhh! No one tell me what happens.

Right now, I'm looking forward to night #3 on my new pillow!! Wow!

Abby was readmitted to the hospital around 2:00am this morning. The doctor is confident that:

1. It is NOT a new illness
2. It is NOT the old illness coming back/getting worse
3. It WAS a big mucus plug that we couldn't get out giving her chest PT at home

Meg and I thought this is what it and it sounded reasonable judging by the way last night's events unfolded.

Meg fell asleep last night holding Abby on the couch. Sound asleep, her sats were around 95% on 1.5 liters. We checked her again a little while later once she was in her crib, and she was still in the 90's. Then, I gave her a Xopenex breathing treatment and that's when things got bad. Seems likely that the neb loosened the mucus and it was just too big for her (and us) to work out. By the time she got to the ER, her sats were high 70's -- not good.

So right now, she's back to just 2 liters and in the mid-90's again. They are mimicking the type of support we'd be giving her at home to see how she does.

I'll be taking the night shift tonight as my company is closed on Good Friday, so hopefully we'll have a quiet rest of the day.

Me And My Sickie -- Part Deux

Just a quick post that Miss Abby is in the hospital.

Again.

With pneumonia.

Again.

Hopefully, we'll be coming home tomorrow, but I'd certainly appreciate any thoughts, prayers, crossed fingers/toes, etc. that are out there to spare!

Our Blue Marble

I started watching the Discovery Channel's new 11-part mini series Planet Earth on HD On Demand. WOW!

If you are not watching it, may I please be so bold as to ask you why the h-e-double-hockey-sticks not? The bird's eye view of our planet's vast climatological and ecological diversity is both stunning and breathtaking. The series is narrated by Sigourney Weaver and took over 2,000 days to film.

So far, the episodes "Deep Oceans", "Mountains", and "Pole-to-Pole" have aired. "Deserts" and "Ice Worlds" debut on April 1st. No fooling.

Me And My Sickie

Is there anything more pathetic than a sick, helpless, little kid with a head cold? Ball full of snot aside, there are worse things in the world than cuddling and napping on the couch under a soft blanket all afternoon with my little peanut.

We were supposed to head to my in-laws for the day for Megan's grandfather's birthday party. But since Miss Abby is currently on O2 (just 1 lpm, nothing to worry about), she and I stayed at the homestead together as an 18 month old, sick or not, is not allowed to be home alone and unsupervised for an extended period of time. Betcha never knew that.

So now it's off to make Abby her cocktail. That's right. A cocktail. How else do you think she's going to sleep tonight?

Well, OK, so not a cocktail in the conventional sense. In the next few minutes, she'll enjoy (in one form or another):

• Flovent
• Xopenex
• Atrivent
• Singulair
• Omnicef (day 10 - yahoo!)
• Orapred
• Motrin
• Tylenol

Yummy.

And while I'm doing that, AJ is laying down watching "A Charlie Brown Christmas" a mere 3 1/2 hours before April 1st. And no, we don't have it on DVD. It's been living on our DVR since December (and "It's The Great Pumpkin Charlie Brown" has been on there since October).

Good grief.

OMG! I'm On FatDoc's Blogroll!

Although I am in my blogging infancy, I found myself linked on FatDoc's blog! Holy cow! Sure, I link to her on my blogroll, but so do thousands and thousands of other bloggers. I feel like I've been nominated for an Academy Award. I am humbled and honored and I find myself without a prepared speech. Except of course for the notes I scribbled while waiting for the limo to the Kodak Theatre.

A true celebrity in the blogosphere, FatDoc (who was recently nominated as a Thogger -- a blogger that makes you think -- by NeoNatal Doc) speaks honestly, eloquently, and humorously about her life as a physician, a mother, and the wife of a pastor. She speaks of her personal challenges, the love of her church, her patients, and of course those med students. And at the end of every month, I nervously await to see if she'll finish her charts or get docked $1,000. It's a photo finish every time!

Not sure what it was on Mind Flakes that caught her eye, but I'll do my best to keep it up. And by the way, FatDoc, if you are reading this, you had me at Misery.

I Think I'm . . . Yeah, I'm Disappointed

So the 'rents were awesome enough to take AJ for the weekend. They took him down to the Jersey Shore to where my grandfather lives year-round now. They had a very nice time, though AJ was a bit under the weather. My grandfather gets a kick out of having the great-grandkids running around. Between my Dad's and my Aunt's (Dad's sister) family, we are clearly the favorites. And by that, I mean that he (my grandfather) gets significantly less annoyed by my kids than my cousins' kids. But I digress.

Meg and I spent a nice weekend with Miss Abby -- just the three of us. On Sunday though, we headed up to North Jersey and checked into a nice Radisson just off the New Jersey Parkway. Now, we didn't do this simply to enjoy the urban sprawl that is Paterson, Paramus, Mahwah and the quaint surrounding towns. On Monday, Abby had an appointment with the feeding clinic at St. Joseph's Hospital for Children.

Now, I need to provide some history here, so bear with me.

Abby doesn't eat.

And that's about the gist of it.

OK, so maybe a little more history would be useful. Abby had surgery to repair her esophagus, has reflux, used to be tube fed (NG tube), and has had all sorts of nasty stuff literally shoved down her throat. It took 10 months before she took sustainable nutrition solely through a bottle (and that's with formula mixed to a higher than normal concentration). She has slowly come to accept food, but only in small insignificant amounts. And for the most part, she needs to be in control (that's a big thing with her). Coming at her with a spoon full of baby food is just asking for trouble. Along with a shirt full of baby food.

We've seen many specialists over the past year to help us get control over the situation. We see a pediatric GI doc regularly (who is incredible), she gets OT and Speech therapy that also address her feeding issues to some extent, and we've been to the feeding clinic at the Children's Hospital of Philadelphia. Most recently, we went to a private-practice speech pathologist (who does not take insurance). We actually got some good advice from her and have seen some optimistic if not encouraging signs from Abby within the past week as a result of more structured "practicing" with the spoon. We praise her for the good behaviors -- she loves that -- and we ignore the bad ones as to not reinforce those.

Everyone we've spoken to has really hyped up the feeding clinic at St. Joe's as being the best around. Needless to say, we had some moderately high expectations from this. So we got there and they took us back on time and the LNP took a history. We joked that we should just record Abby's (extensive) history and provide a CD to each medical professional who needs one. Side note: For all of you medical folk out there or those lay people who have experience with this, I came up with a little PDA joke. When asked if there are any cardiac issues with Abby, I say no, but that she did have a PDA. I then say that it either went away on its own or is now so big that no one can hear it. Ba-da-bum! I crack myself up.

OK. Sorry. So then they observe us feeding Abby with the spoon from behind a one-way mirror. We go through our regular routine, clapping when she accepts the spoon, and breaking eye contact and ignoring her when she refuses or swats it away. All in all, it was not one of her better performances. She did accept, chew, and swallow some Gerber puffs. Then they weighed her, measured her length, and a PT came in and did a brief evaluation.

After a few minutes of consultation behind closed doors, they came back with some recommendations. First, we need to address her recent constipation problem (TMI, I know), although her feeding/swallowing issues greatly precede her pooping difficulties, so we have a plan for that. They gave us a tip or two to refine the spoon feeding sessions. And they suggested we come back in a month.

And that's about it.

Huh?!?!

Good grief. And this is "The" place to go? Now I learned a while ago that feeding/swallowing difficulties are tough nuts to crack. It seems to be an art more than a science as there are just so many variables, but come on. I can't believe that we can't develop a more detailed action plan. I know it's one step at a time, but no one seems to know what the next step will be until we are there.

Do I have unrealistic expectations? If I do, please tell me. Mind you, I'd drive 500 miles a day to take her to a clinic if I thought it would help get us over this hump, but are we being selfish if we choose not to go back here as the trip doesn't seem to justify the benefits??

I think we are going to make an appointment with the GI doc to go over this evaluation and probably set up some kind of schedule with the private-practice speech pathologist and hopefully incorporate her guidance and advise into Abby's OT and Speech therapies.

Ugh.

Just very disappointed.

Part VII -- The First Night

The cardiologist came in around 10:00 at night. The NICU was quiet, and we stood next to Abby's bed as we anxiously waited for her to set up to do the echo. She began evaluating Abby's heart and studying the Doppler images on the screen. I wouldn't let my eyes stray from those pictures, though I could not decipher their meaning.

Slowly, the doctor began to speak to us. Structurally, her heart looked good she told us. And with those words, relief swept over me. She advised us that Abby did have a specific type of murmur, called a patent ductus arteriosus, or PDA. During fetal development, this shunt protects the right ventricle from pumping against the high resistance in the lungs, which can lead to right ventricular failure if it closes in-utero. While this shunt normally begins closing with a newborn's first breath, Abby's didn't. And so some of Abby's oxygenated blood was being misdirected and not allowed to reach her body. The PDA was by no means life threatening and would require no immediate action. It would be a wait and see approach and something for her regular pediatrician to keep an eye on. As far as we were concerned, she passed her echo with flying colors.

We stayed with her for a while, but eventually we kissed her goodnight and went back to the room. Abby was sleeping and everyone had gone home. At night, the hospital changes. It's quiet. It feels slower and the stale air rests heavier on you.

And there we were. Alone. I slid the cot next to the bed and Megan and I laid down next to each other. The curtain that hung from the ceiling shielded the light from the nurses station and we tried to make the hospital linens that we were covered with shield us from everything else.

And within the darkness in which we rested, the fear came back. And with it, the uncertainty and disbelief of the past 14 hours. Is that all it had been? Surely, a lifetime had passed.

And so we took turns comforting each other. Alternating between the one needing strength and the one giving it, we made it through that first night.

Looking back now, I know where we found that strength.

It came from a little girl down the hall.

A little girl that had so much, she gave it to her parents who needed it so badly.

To be continued.

Just For Fun - LOST

In a slight departure from most of my posts, I thought I'd share this little gem I found on YouTube. Even if you are not a LOST fan (huh?) you have to admire this guy's mad Photoshop skillz.

Presenting John Locke in fast forward . . .

Blogger Ate My Post, or How We Celebrated World Down Syndrome Day 2007

Yesterday, March 21st, was World Down Syndrome Awareness Day. I wrote out a nice post describing my thoughts on the day and what we did.

Then Blogger pooped out on me and I lost everything.

Not having the strength to re-write the post, I thought I'd sum things up for you . . .

1. Diversity is good. Celebrate it. Our differences are what make us the same. Our world is rich in experiences and wealthy in variety. After all, it's the spice of life.

2. If you are lucky enough to have someone special in your life, be happy. Be proud. Be their advocate.

3. Be excellent to each other (and party on, dude).

Speak Up

I know that so many of you do, but it never hurts to be reminded how important it is for us to be advocates for our children. I myself need to be reminded of this too. It is our job to be their advocates and to teach them how to be their own.

There are words, stereotypes, misconceptions, and fears that are either unfounded or simply have no place in our society. At their most innocent they are misguided, at their worst, they are hurtful and degrading.

Do not be afraid to educate. To clarify. To empower. To correct.

Don't make excuses.

Advocacy is powerful because you will be armed with the truth.

It is not intended to make others feel uncomfortable, although that is a likely, yet temporary, outcome. The alternative is that your child may someday feel hated, belittled, or unwelcome. And with that as your only other option, you will have the courage and strength to speak up.

The Weather Outside

After a brief but pleasant business trip to Cleveland (it rocks!) which included terrific accommodations at the Hyatt Regency at the Arcade and a wonderful dinner at Morton's Steakhouse, my fellow passengers and I surely consider ourselves lucky to be home! I can't say for sure, but I imagine we were probably one of the last flights to get in due to our late season blast of winter.

Once we landed, I counted at least 15 planes lined up waiting to take off. After waiting on the taxiway for about a half hour as another plane was delayed from being pushed back from our gate, none of the planes had moved. Ugh. Nothing like being stranded on a plane trying to take off.

Once back in the terminal, the arrival/departure board was filled with "Delayed" and "Cancelled" alerts. Later, on my drive back home, the news reported that the airport was filled with stranded passengers and that workers were handing out blankets, pillows, and bottled water.

Not that I didn't like Cleveland, but I'm sure glad to have gotten out of there while I did!

Part VI -- Surgery

Children with Down syndrome are at a significantly higher risk of cardiac related birth defects. There were no obvious signs that there was anything wrong with her heart, but a pediatric cardiologist would have to evaluate her.

We were told that she would have an echocardiogram that evening and be scheduled for surgery to repair her esophagus the following day.

Things changed. The doctor informed us that they needed to do the surgery today, before consulting with the cardiologist and without knowing if there were any structural defects with her heart. With each breath, her abdomen was distending. She likely wouldn't survive if they waited to do the surgery the next day.

I understood there was no choice. Stranded in the desert and dying of dehydration, one cannot be concerned with the quality of the only water you find. There are priorities and there are immediate needs. But I needed to know what the risks were by doing the surgery before knowing anything conclusive about her heart. The only assurance I got from the neonatologist was that she was not cyanotic.

We met with the surgeon and he explained the procedure to us. He reassured us that no one in the area has performed more of these types of surgeries than he. He told us what he would do and that as a result of the surgery there would be a 100% chance that she'd have reflux. Reflux I could manage. But a cardiac defect? I was not at all worried about the surgery. I prayed her heart was strong. Abby had taken mine the minute she came into this world and now I was frightened for hers.

Slowly, family started to arrive. We hugged. We cried. We had questions. We wanted answers. There were none. We relived each moment over and over again and tortured ourselves with searching for reasons where none existed. We promised support for each other. None of us were alone, but each of us felt as though we were.

A nurse came into the room and told us that the surgery was over and the doctor would meet with us. We hurried into the lounge and waited for the surgeon. Finally, he came in. He told us that the surgery could not have gone any better. At that moment, I realized that I was in fact concerned about the surgery. Of course I was. How could I not be?

The repair would be evaluated in a day or two and if it was sound, we could start feeding her. We made plans for her to be at the hospital a few more days. Maybe a week. But no more than that.

And so we waited. We waited for the cardiologist. Family left and still we waited. We stayed with her in the NICU. I looked at the other children. The other families. What were their stories?

Each of them had one.

No one wanted one.

To be continued.

Part V -- I Remember

There is a lot about that day that I remember. Details that remain with me. Things that, by themselves seem small, but that loom large within the fabric of my story. Of Abby's story.

There are also gaps of time that are lost to the tragedy of that day.

The doctor left us. The nurses, after offering a consoling glance, followed him out the door. Meg and I remained in the room, but we were not alone. With us was a sea of uncertainty. Of sadness. Of disbelief.

We said nothing for a long time. There was nothing to say. We held each other and silently grieved for the daughter that we lost, scared for the daughter that we had. We didn't understand what was happening, and we certainly didn't understand why. I don't remember who spoke first or what was said, but I know that what was spoken was said out of fear. I know that now.

I remember calling my parents back. My mother heard me say "hello" and immediately she asked what was wrong. I must have told her about the TEF first, because I remember saying that there was something else.

I told her that the doctor thinks that she has Down syndrome. I don't remember what she said next. I don't remember what I said next.

I don't remember what there was to say.

To be continued.

Tag, I'm It

Jeff over at OWTK has tagged me for my first meme.

The topic? My five most favorite things about feminism. Yeah! OK, so here we go . . .

5. The fact that I am perfectly OK typing this list while my wife literally is sitting on my lap providing me with her valuable input.

4. That I am happy that my wife just explained to me that what I was about to write for #4 was actually anti-feminist.

3. My wife has a better relationship with our car mechanic than I do.

2. That I can have an intelligent conversation with my wife about sports -- and that she doesn't make me feel too dumb.

1. That Danica Patrick is HOT!

Sorry.

Alright, I think I need to throw this back to the ladies, so now let's hear from:

Pam at Rhett's Journey

Tammy at Praying for Parker

Nicole at All 4 My Gals

Carey at Dream Big

Amy at the Flege Farm

Part IV -- Windmills & Tulips

I never had any particular desire to visit Holland, but it was to Holland that I was going. And it was in Holland that I would stay.

An hour and a half after Abby was born, the neonatologist came into the room. I was sitting next to the bed. The two nurses were standing in the corners of the room. The doctor sat down opposite me. I didn't like that he was sitting.

He wished us congratulations on our beautiful new baby girl. He asked what her name was to be. Abigail Elizabeth we said. Abby.

He told us that there were a few things he needed to go over with us. "I don't suppose you had a chance to look at her after she was born, did you?", he asked. We both nodded, not quite yes, and not quite no.

Here it comes.

"There are several physical characteristics that I noted", he added.

Here it was.

I felt terrible for already knowing this for over an hour. I had already been processing it as the reality it was. Meg didn't know. I was scared for her.

Trisomy 21. Down syndrome. He stole our baby as the words came out of his mouth. He took our daughter. AJ's sister. Our dream. Our family.

Moderate to mild mental retardation. IQ ranges. Early intervention. Therapy. Special Olympics. Support groups. If I thought this was too much information to handle, to process, then the next hours, days, and weeks, would test my very ability to function as a person.

We held hands. Meg looked at me. She looked terrified. I looked back at her with the slightest hint of a smile, and I nodded "I know".

I knew.

But there was another problem. Her esophagus hadn't formed properly. Coming up from her stomach, it was connected to her lungs. Travelling down her throat, it ended in a blind pouch. Tracheoesophageal fistula with esophageal atresia. Otherwise referred to as TEF, it is a birth defect occurring in roughly 1 birth in 4,000.

It is why the tube they used to suction the amniotic fluid out of her nose and lungs after birth wouldn't pass far enough down. It is what caused the bubbles at her mouth. It was what would require her to undergo surgery 5 1/2 hours later.

And it was what most likely caused the infection that would very nearly take her from us forever.

To be continued.

Part III -- Waiting

I took a picture of Abby as they wheeled her out of the birthing room and down to the NICU. She had a little pink hat on.

We began the ritual of calling family and friends. I remember calling my parents and telling them simply, "7 pounds 4 ounces". They never told us her length. They were shocked. Not by the weight, but by how quickly things happened. I heard them tell AJ that his new baby sister was here. "I am happy!", he replied.

My Mom asked if everything was alright. I said yes, but that they were taking her to the NICU to make sure her lungs were OK because of the meconium. We called my in-laws, sister-in-law, work. We gave everyone the good news. I knew that the news likely wasn't all good.

And so we waited. But we weren't alone. Two nurses -- actually an RN and a student nurse -- were with us. They came in and out of the room, but they were there. They were there because they knew. They clearly knew. One of them went down to the gift shop and bought Abby a little stuffed animal. One that wouldn't leave her side for six weeks.

I tried to put it out of my mind. I knew it couldn't really by true. I tried to read, but I couldn't. I looked at the pictures I took of her. I focused on the one where she had the pink hat on. I was overreacting. Look at her. No way.

Meg talked on the phone. I paced. I looked out the window. It was overcast. I looked at the traffic on the road. At the cars pulling in and out of the hospital parking lot. I looked at the pictures again. I became more convinced.

That it was true.

To be continued.

Check this out!

We interrupt our story to bring you this important commercial announcement!

Please take a few minutes to check out the awesome and original artwork over at BSB Creations!

T-shirts, sweatshirts, note cards, totes, artwork, fleece blankets, and wooden letters are all available now. Coming soon are bibs, hooded towels and burp cloths!

Becky is a fellow T21 parent and has come up with a fantastic, unique design. The three caterpillars depict the shape and orientation of the three #21 chromosomes that are the hallmark characteristics of Trisomy 21, or Down Syndrome.

We've already ordered one piece from Becky, and we'll certainly be coming back for more!

Part II -- Beautiful Eyes

I didn't notice how far the tube went into her nose and down her throat. I didn't notice how far it didn't. I didn't notice the bubbles at her mouth.

I noticed her not crying, but they told us they didn't want her to. Her eyes were open and she was pink.

Meg was exhausted. We had only arrived at the hospital a little over an hour ago. She laid back in the bed and breathed a sigh of relief. I wasn't ready to allow the breath out yet. They let her hold Abby for a moment before they took her.

I stayed at Meg's side while the doctors were with Abby. At the foot of the table where they had Abby, there was a nurse -- one of many. She was tall with blonde hair. We made eye contact. There was no expression on her face. She broke her gaze and went back to work.

A few minutes later, they called me over so I could take a look at my new baby girl. I went over to see Abby. I looked at her and smiled. I saw her eyes. I saw it instantly.

It was in her eyes.

To be continued.

Part I -- Delivery

Meg said that it was baby day. We both tried to get back to sleep and did -- at least I did -- for a little while. It was about 3:00 in the morning. I was excited, but something felt different than 3 years prior when AJ was born.

I took our 3-year-old-to-be to my parents' house. He knew his baby sister was going to be joining our family. When I got back to the house, Meg was eating breakfast in between contractions. She knew that once at the hospital, her sustenance would consist of little more than ice chips.

We got in the car and headed down to the hospital. Meg knows that if I don't have coffee in the morning, I'll get a really bad headache. She asked if I wanted to stop, but I said no. As we got closer to the hospital, we hit a lot of morning rush hour and school traffic. We were stopped at a light where there was a Wawa. Since her offer still stood, I pulled in and got some coffee and a breakfast sandwich. When I got back to the car, I really noticed just how uncomfortable she was. The contractions were getting pretty intense.

Meg was supposed to have an ultrasound that morning at her OB's. At her previous visit, the doctor wasn't 100% sure that Abby was head down. She had been, and most likely still was, but they wanted to be sure. At the hospital, she was evaluated in a triage room. She had a lot of extra amniotic fluid and I could see the concern growing on the faces of the doctors and nurses. I asked if everything was OK. Unconvincingly, they said yes.

She asked for something for the pain, but there was nothing they could do. She was 9cm already. Between contractions, they tried to check Abby's positioning with the ultrasound. She was pushing. They told her to breathe. If you breathe, you can't push.

She was head down and we were wheeled into the delivery room. They told us she'd deliver as soon as they broke her water. There were a lot of people in the room. They broke her water and the doctor examined the fluid on her fingers. It was streaked with meconium.

The NICU staff was there and the warming table was heating up. She looked at me and told me she was scared. So was I. She started pushing. She was making good progress, but Abby's heart rate was going down.

They told her she needed to deliver now. And she did.

She was beautiful.

And so was Abby.

To be continued . . .