The Gray Area turns one!

Emily insisted on getting her hair perfect for the big occasion. Eventually she'll learn that the bristly side works better. 

It's true, loyal readers. By the time this is posted, it will certainly be well after midnight, which puts us at September 7th. The cannons will roar and the champagne will flow and the people will dance merrily, celebrating the fact that exactly one year ago, a blog was born. Or, I'll drink some tap water, take the dogs out one last time and sleep the sleep of a man who hopes his daughter stays in dreamland until at least late morning. Hard to believe I don't have my own reality show.

Back to this obviously monumental event and the self-congratulating portion of the program. In an effort to avoid spending hours on the phone updating loved ones on Emily's progress, I put together this page which has now spread, literally, worldwide. (I see you Brazil, England, South Africa, and Australia...thanks for stopping by!) Whenever I sit down to write, if I'm not deep in some absurdly self-absorbed funk, I am primarily thinking of those closest to me and their desire to keep up with our kid. I suppose I never considered the fact that I might be able to have an impact on other people who share these experiences. I hope you are all getting something out of it. If not, well...uh...I don't know what to tell you. This is all I got. 

Since I'm almost positive none of you are here to listen to me high-five myself, I suppose I could spend some time on our soon-to-be-13-month old. Emily continues to develop in leaps and bounds. Many of you have already seen the video below with her strolling across the family room...aided by her trusty cart. She doesn't do it a lot, as it's faster and easier for her to crawl, but she does it just enough to let us know she's got it in the arsenal. Because of the eight cm discrepancy, she tends to push the cart by "walking" with her short leg and "crawling" on the knee of her longer leg. Whatever mode she chooses, she is very, very mobile...which includes climbing stairs, pulling herself up on couches and tables...basically whereverthehell she feels like going. The only thing holding her back is a desire to avoid any trips to the ER by her parents. 

Which brings us to another development. Emily has clearly begun to assert her independence. Gone is mellow, sweet, go-with-the-flow Emily. While she is still just a handful of sunshine the majority of the time, she has no problem letting us know when she wants down, up, food, toys...just whatever her pretty, little heart desires. How does she let us know? Well, she just tells us! Her vocabulary is slowly expanding. She's got a handle on "dada," "mama," "hi," "buh-bye," "woof woof," "uh-oh" and "Piper." She's still working on "Moose." But what I'm most proud of is her progress on "please," where she will hand you a book and say "pleezsh" as in "Father, I would certainly appreciate it if we might sit on the couch together while you read this story to me. Please." I'm still a bit fuzzy on the rest of it, but she is clearly having a conversation. What's being said or who she's talking to is open to debate. I just try and keep up my end of the discussion with standard responses. "I know!" "Right?" "Is that so?" "I told you that chick's crazy!" And so on. 

While I realize a number of you are here for PFFD-related information, I find myself somewhat lacking in that area today. Trust me...that's not a bad thing. If I can avoid ever feeling like this again, I'd like to do so. But I suppose that's the beauty of being where we are. We're past the point of not-knowing. We've met The Man. He's on board. We've got a plan. A schedule. We can enjoy Emily for who she is and not focus solely on what she has. 

Before you get all giddy and think we're going to completely re-vamp the site by putting a banner that reads "Super Deluxe Happy Fun Time" superimposed over a picture of a smiling family with everyone laughing and holding hands and wearing matching outfits...slow down. I still have my dark, depressed, rage-filled moments as I watch Emily's right leg dangle just out of reach of the floor. Those moments usually feature my inner-monologue yelling questions that start with "WHY THE F-..." But that's just what they are...moments. They don't last for days or keep me company during sleepless nights. 

I suppose that's the difference a year makes. We are a year older. We are a year wiser. 

And we are a year closer to all that pain and uncertainty just being a distant memory. 

Go Ems, GO!

Daddy's girl.

The first of perhaps three posts tonight...an unprecedented level of production. Why? Cuz it's my blog, goshdarnitall.

A brief glimpse.

This Macbook photo was inspired by the following conversation...

Kate - "I love her belly!"

Tim - "She looks like a frat boy."

Now THAT was a party!

If you read my last post, and I mean really read it, you might recall somewhere in that rambling mess that we returned from Florida last Thursday night, cleaned up poop, slept, went to work, slept a little more and then hosted the first birthday party for our beloved Ems. No small task, right? Well, despite a little fatigue, I really think we pulled it off. Everybody who attended, young, old and in-between, seemed to have a pretty good time. Of course, I don't really have proof. Oh, wait...yes, I do. BAM! Cousin Sarah does it again! 

Our visit with The Man.

This past month has been a bit of a whirlwind for my little band of Tredwells. Kate and I spent July 7th to the 9th in Chicago, quickly followed by a week-long family trip to Texas. After a ten-day breather at home, we were back in the air for six days in Florida, returning home for good on August 6th at about 11 pm. For you math junkies, gnaw on this word problem for a minute...

Tim and Kate flew more than 2600 miles with their infant daughter, Emily, to two different locations in the United States where the sun is known to rest approximately seven feet off the ground during the day. One of these locations featured Tim's family whom he rarely sees and loves dearly, but includes two spirited, small children. The other location features a surgeon who may potentially have a solution to Emily's rare condition but only through dramatic and painful surgeries. Tim has a propensity for snarky comments when he gets tired, angry, stressed, frustrated or just plain bored. Using the information given, calculate how long Tim will have to wait in Purgatory before being allowed entrance to Heaven, if you think he hasn't already booked a reservation for a seat next to the broken air conditioner on the bus to Hell. 

Ok, that took a long time and probably wasn't worth it, but it seemed like a good idea at the time. Shut it. 

Anyway, we got back late Thursday night to find that our bulldog Moose had missed us so much, he left liquidy poo all over the first floor of our house. ALL OVER. You know those thoughts about coming home after a long trip and being so happy to just be home and see your dogs and not be living out of a suitcase? You know that feeling? Well, it lasted as long as it took me to open the door and be assaulted with canine biological weapons. Not good times. Bad times.

And the hits kept coming. Kate and I cleaned up, caught a quick sleep and split the next 24 hours between work and feverishly preparing for Emily's first birthday party which, as anybody with children can attest to, takes more than just mixing Kool-Aid, opening a fresh bag of Ruffles and making sure the front door is open. 

Nevertheless, the weather was perfect, the party was awesome, merriment was had and pictures were taken. But we'll save that for its own post. We've got other stuff to discuss.

The whole point of being in Florida was to see Dr. Paley. He had suggested we fly down for an MRI and a consultation. Naturally, we did as we were told. We tacked a few days on to the front end of the trip to at least give this trip a vacation-like feel. Emily attended her first Cubs game where she watched them lose in typically crushing fashion (get used to it, sister) to the host Marlins, checked out the Miami Seaquarium and polished up her tan on the beaches of Fort Lauderdale. 

But then it was all business. To say I was on edge about this MRI would be an understatement. The thought of drugging my only daughter so she'll lie still is not a pleasant one. The good news was that she would be given chloral hydrate to drink instead of sticking her with an IV or strapped up with a gas mask. And, typical of our little fat kid, she sucked it down like it was fruit punch. The nurse who had spent so much time telling us kids usually throw it up because of its awful taste thought it was hilarious. 

One moment I'll probably never forget came as Kate was rocking her to sleep. Ems was clearly fighting it, but the eyes got heavier and heavier. Right before she went down for the count, she looked up at me and gave me a little buh-bye wave. Afterwards, she reached into my chest, yanked out my still-beating heart and made it into a keychain. Damn kids.

In the end, she made it through both the MRI and the x-rays with minimal fuss. Kate even managed to sneak a quick picture of her enjoying a well-deserved bottle in her adorable little hospital gown. 
The rest of the day was shot as Ems was still loopy from the drugs. Of course, she recovered enough for a late night dip in the pool, plenty of food and a good night's sleep. 

The next day we arrived for our 2:00 appointment with Paley and were greeted by the friendliest team of nurses. They could not get enough of Emily and the feeling was clearly mutual. We also met with the patient coordinator who introduced herself by saying, "I'm the patient coordinator, Caroline Eaton....I love your blog!" Ms. Eaton is well-versed in Paley's ways. Besides working with him, she has appeared on his operating table multiple times. That's a pretty big vote of confidence, in my humble opinion.

We also got to talk with one of his physician's assistants who spent a good amount of time getting to know us. She spoke almost reverentially about him, talking about the amazing things he is accomplishing in surgery. Again, all evidence that we are on the right track. 

After Paley finished another small miracle in surgery, he came upstairs to see us. The visit was brief as he went through the necessary images of Emily's leg. With an eight cm discrepancy and everything else looking strong, Ems is right where he thought she'd be when he first saw her six months ago. He said we can expect that discrepancy to triple by the time she's fully grown. Of course, he just may have something to say about all that. His first statement will be August 17th, 2010. Super-hip surgery is scheduled. 

Here. We. Go.

One year ago today.

You turned one year old today, Ems. We waited nine months to meet you and your arrival instantly altered the course of our lives. Your mom and I have spent the last year falling more and more in love with your infectious giggle, your Coney-Island-hot-dog-eating-contest-like appetite, your animal noises which all seem to sound like the same jungle cat, the fact that it appears like you're imitating me, but there's a good chance you're actually poking fun at me. It's just the way your dad would do it.

What you don't yet know is how much I admire you, Emily. You have no idea what's ahead. Right now, you couldn't care less that in just over a year, you'll go through a horribly complex surgery that will put you in a lower body cast for six weeks. You couldn't possibly fathom what it's going to feel like when you have to go through three separate, painful procedures to help that right leg catch up to your left. You just keep smiling. And you keep making other people smile. You make it impossible not to. 

In one year, you have taught me more about inner strength, resiliency and courage than I could have ever imagined. But you're just getting started, aren't you? 

Thank you, Emily. Thank you for everything you have given us. Thank you for being you. 

Happy Birthday, Ems. Daddy loves you. 

Fellow PFFD-ers.

When I went back to school to become a PE teacher, I had to take anatomy and physiology I. It's about as basic a course as possible. This bone connects to this bone which connects to this bone. Memorize it. Test Friday. 

Well, the first test rolled around and you'll be happy to know I got the second highest grade in the class...with a 34. That's a 34 out of 100. (Highest grade was a 63.) People failed in spectacular fashion. People failed with sevens and eights. I wish I were making this up. 

I was furious with myself for my performance, furious for my lack of preparation, furious about the impression I was leaving with my professor. People actually tried to point at the bright side by mentioning how nobody else did well, you still had one of the top grades, blahblahblah. None of that mattered to me. I failed. 

My point is this...I rarely found comfort in the fact that other people were sharing in the same struggles as me. 

(Ha! You thought we were playing connect-the-dots between anatomy class and Emily's femur, didn't you? Admit it...that's what you thought. Never forget I'm a bit of a self-absorbed prick. Moving on.)

Anywho, when Kate told me she had used Facebook and other sites to connect with other families with children who have PFFD, I thought it was great. For her. She'd be able to share experiences, make some new friends, perhaps find a comfort zone with everything. I chose to work on this blog. It would be my comfort zone. By the way, it's probably unnecessary to point out how this blog has turned itself into some kind of digital-age group therapy, thus rendering my previous point about not caring about other people with the same problems completely moot. Shut it. 

So, when Kate mentioned some of the families she had "met" online lived in the Dallas area, our recent trip seemed to be a perfect opportunity to finally get together with some of our fellow PFFD-ers. 

It was a fascinating evening. Burgers and dogs, kids all over the place and plenty of interesting conversation. Try and name another event where the question "so, does everybody have five toes" would NOT earn you a series of sideways glances and sharp whispers? (It's common for people with PFFD to be missing a toe or two.)

Everybody's story had its own twists and turns, but they followed a familiar path. There were meetings with local orthopedists. Vague reports. Difficult decisions. And we all talked about Dr. Paley like he was an old friend. Allow me to introduce you to some of our people.

This beautiful girl is Michelle. Her parents, Matt and Lisa, hosted the event and could not have been any nicer. Michelle's condition was like Emily's in that it was a complete surprise at birth. Unfortunately, x-rays showed her left femur to be about the size of a dime. Dr. Paley, miracle-worker for so many with PFFD, could do nothing, saying it was one of the worst cases he had ever seen. Still, Matt and Lisa found comfort in the diagnosis as it took the decision out of their hands. Her left foot was amputated which, when she is fully grown, will look like an amputation just below the knee. After watching her all evening, it clearly has not slowed her down. Not that she can afford to relax. She's expecting a baby sister in October and somebody will have to keep that kid away from her toys.
Ethan is one of the smoothest kids I have ever seen. I'm serious. This toddler has game. I would so be high-fiving him if my daughter wasn't on his radar. You should have seen him smiling at all the girls (he was the only boy in attendance,) and gently stroking their hair. His parents are going to have their hands full. They should be used to it. It's been that way since his mom was 26 weeks pregnant and pre-natal testing led them to believe that Ethan had a skeletal disorder that would make it difficult for him to reach full term. Abortion was suggested. Further testing erased thoughts of that rare condition and instead suggested a cancerous mass on his femur. MRI's were inconclusive. When he was born, he was found to have a short femur and a missing fibula in his right leg, but otherwise perfectly healthy. To say it was a relief would be an understatement. They'll be visiting with Dr. Paley on August 20th. 

This little firecracker is Abby. She is such a happy, social kid, looking for hugs from whomever was close by. Her PFFD was discovered during pregnancy which gave her parents a heads-up, but little else. Severity was unknown and, like it was for the rest of us, information regarding this condition was hardly common knowledge. Her situation is unique in that her femur is short and her tibia and fibula are also approximately two cm short of her other leg. They had just taken a trip to Florida to meet with some guy named Paley and are currently mulling over their options.

This one here is the reason most of you have read this far. You're well aware of her story. To most of you...maybe all of you...it sounded horrible. It sounded, at times, insurmountable. And yet, after reading about other children with similar conditions, perhaps things seem a little different. Do they seem brighter? Do you feel more optimistic? I swear, I remember hearing a story about how these kind of situations are helpful somehow...eh, I'm sure I'll think of it. 

Picture update, Texas style.

That live blogging thing lasted for one post. Sorry. I just wasn't into it. Whatever. Here's one last round of pictures before we get to some actual information. I'll bang that out right after this gets posted. I promise. Really. Why do you doubt me? You know what? Don't answer that. Hey, look! Pictures!

Our hosts, Emily's Uncle Pete and Aunt Kathy. This could NOT have been a nicer visit. Thanks, guys!

A look at the Ballpark at Arlington during Monday's Sox-Rangers game. Pete has been in Texas since September, but now claims to be a "die-hard" Rangers fan. Oh yes...catch the fever!

Signs like this are on just about every place of business in Texas. 

I don't even have a joke here.

I think this is the only way you can finish a picture post about Texas. 

Live from Flower Mound, Texas!

This just in...Texas in July is somewhat toasty. And since this heat is crushing my humor and creativity, y'alls (yes...they say that here) can just enjoy these pictures and we'll talk about our feelings another time.

Some quality pool time is a necessity down here.

The cousins playing nicely together.

I believe most of you know her.

Cousin Allison.

Cousin Caroline.