Thursday, July 23, 2009

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 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, 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. 

Friday, July 17, 2009

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.

Sunday, July 12, 2009

Now with more Emily-ness.

If nothing else, I am a man of my word. 
I deviated from the original course by posting about our brief excursion to the Windy City. The reaction was swift and ruthlessly negative. 
"Nobody cares!"
"Your team sucks!"
"Show us the kid, you narcissistic hack!"
And so on. 
Therefore, in an effort to pander to my worldwide audience, (look at the chart on the right...the stats don't lie!) I bring you news of the child. 
Ooh, didn't that sound dramatic? Well, get over it because I actually don't have too much. We met with Dr. DeLuca this past Monday so he could take a gander at her new shoe lift. We've been putting her in it about once a day to give her a chance to get familiar with the feel. Because she's mostly crawling and doing some cruising along couches and coffee tables, the shoe isn't terribly helpful just yet. At least, according to our humble and non-orthopedic opinions. 
However, we were interested as to what DeLuca was going to say regarding the size of the lift. If you'll think back to this post, we had a budding doctor-to-doctor controversy as Dr. Paley felt the shoe lift should be twice as big as it is. Well, DeLuca looked at it and was clearly on the same train. He didn't want to say definitively, but he felt some more time would be necessary before we made any adjustments. "Give me a call in a month or so and we'll take another look," he said. 
It's worth noting that, in exactly one month's time, we'll be returning from our visit with Dr. Paley. Funny how that works out, right? If I was a high-profile athlete, I would point to the heavens right now. And maybe pound my chest a couple times. And probably pay someone else to write this. Right. Moving on.
Other fun from this past week includes Emily figuring out how to clap...while with her grandparents. That's a fun phone call. 
"Hey, does Emily know how to clap?" 
"Well, she does now."
Apparently, she took a look at her right hand...gazed at her left hand...and smacked them together which both surprised and amazed her. She's been enjoying it ever since. There are now constant ovations in the house. Super for the self-esteem. 
Finally, in what will be a string of firsts for Team Tredwell, we will all be headed down to Texas this Tuesday to visit with Emily's Uncle Pete, Aunt Kathy, cousin Caroline and cousin Allison. This will be the first trip to the Lone Star State for all three of us, as well as Emily's first plane ride. As excited as I am to see my only brother and his family, I'd be lying if I said I wasn't a little nervous for this flight. Emily has been the most wonderful baby...mellow, engaging, and cute enough to make a bishop kick out a stained-glass window...but she's still an 11-month old. An 11-month old that's trapped in a pressurized metal tube for over three hours. You get the idea. Say a prayer for us. I'll take all the help I can get. 
That's it for now. Perhaps I'll delve into the world of road-blogging this week. Live from Texas! It's The Gray Area! Oh, the excitement...

Only slightly Emily-related.

I realize this blog was designed to keep you up to date on all things Emily. And, clearly, that top picture is NOT Emily. That's because mommy and daddy felt it was crucial for our little girl to get some quality time with her grandparents. 
As parents, we are responsible for so very much. We teach, we comfort, we counsel, we discipline..the list is endless. But the simple fact is, every once in a while, kids need spoiling. It's in the rules. Look it up. That job falls squarely on the shoulders of the grandparents. It's not just their right, it's their responsibility. So, being the model parents that we are, we sent Emily off to Grammy and Grampy's house for a few days. 
With some time off, what were we to do? My first reaction is always, in an almost Tourrette's-like fashion, "Chicago!" So off we went. 
(By the way, did everyone catch that? I totally made it sound like Emily needed time away from us. No, I didn't plan this trip months ago. It's what Emily needs. It's really in HER best interests. Got it? Back to the story.)
Being a life-long Cubs fan, I grabbed (read: overpaid for) a couple of prime seats four rows from the field just past first base. They were on the visitor side, which forced us to be surrounded by Braves fans, but, I mean, who cares? WE'RE FOUR ROWS FROM THE FIELD. We got to our seats well in advance of the first pitch where I sat in utter disbelief at our location, mumbling to myself "this is unreal...this is so cool...unbelievable..." while Kate just smiled and shook her head. 
Several hours, hot dogs, Old Styles and cotton candies later, it was time to head back to the hotel. We spent the next day wandering around downtown Chicago, dodging raindrops, eating too much and drinking even more. Before we knew it, we were on a plane home. 
Everybody seemed to enjoy their time. Emily loved spending time with her grandparents. Grampy got to show her off at his favorite lunch spot and introduced her to donut holes. He's no rookie!
As much fun as it was, it's good to be back home with our girl. 
Enjoy the pictures. I promise a post in the very near future that will be chock-full of all the Emily-ness you've come to expect from The Gray Area.
Count ', two, three rows between us and the field. Awesome.
This is really the only reason Kate agrees to come here.
How do YOU think the game is going? 
Despite the loss, we managed to get a nice picture at the end of the night.