"This is very manageable."

After meeting for 90 minutes on Saturday, those were the words of Dr. Dror Paley as he shook our hands and said goodbye. As last words go, they left quite an impression. 

After more than six hours of driving this evening, (thanks GW bridge!) I thought this post would write itself. Ha! Not so much. There's just too much swirling around the ol' melon right now. I will try and summarize to the best of my ability. 

I'll start by saying this...Paley is a surgeon. No doubt about it. He's calm, intelligent and very sure of himself. He didn't spend time cooing about Emily's cuteness or how good a drooler she is. He has a job to do. And, frankly, I don't care if he preps for surgery by giving me an atomic wedgie...if he can do what he says he can do, he's got carte blanche with me.  

I could spend all day going through my notes and detailing the surgeries and rehab, but it's stuff I've already discussed. Super hip surgery at age two. Lengthening surgeries at ages four, eight and 12. You knew that! Pay attention! Right. So let me bullet the key points from today. 

• Orlando is out. Apparently the Disney Children's Hospital backed out of the arrangement they had with Paley due to financial issues. He is currently looking for a new place to set up shop and should know in the next six weeks or so where that will be. He mentioned he might come to the northeast. Could we possibly be that lucky??
•  In discussing the lengthening surgeries, he talked about how far the technology has come just in the last ten years to the point where he didn't even want to get in to her lengthening at age 12, saying it will probably be completely devoid of a bulky, external fixator. "If we're still using the same techniques ten years from now, I'll be very disappointed," he said.
•  When I started to spin a yarn about our experience trying to find information and a possible solution to this PFFD mess, he cut me off and said, "Lemme guess, you went to an orthopaedist who told you amputation was the only thing to do, right?" He chuckled. "Really sensitive how they do that, right?" His words...there is NO REASON to amputate. 
  

Let's understand each other. Some things haven't changed. This process is still going to be long and unpleasant. The rehab will be hard. The pain will be significant. But I'm drinking the kool-aid. I'm buying whatever he's selling. 

Our next step is to wait for Emily's first steps. When she starts standing, it's time to look for a prosthetic device to make sure she can motor around with the best of them. 

As our meeting was winding down, Dr. Paley said, and I will freely admit to getting teary as I write this, " I can look you in the eyes and tell you right now...we will get your daughter's legs to an equal length." 

We're on the attack. 

A brief production note.

Nothing grand to report just yet. Friday we take the ride to Baltimore to meet with Dr. Paley. We'll be home late Saturday and, after a day of driving and processing, I'll be sure to update you on all pertinent details. 

In the meantime, I've added a links section over to your right where you can check out Dr. Paley's new website as well as the Disney Children's Hospital site. If this is the direction we're headed, and it looks like it is, it won't hurt any of us to be as well-informed as possible. 

That's all. Wish us luck. 

A step forward.

Yesterday was Emily's appointment with Dr. Brian Smith over at Yale. Kate and I, while ever-hopeful some doctor is going to kick the door in and tell us about some quick-fix solution (have her take this pill! She'll grow a full femur by the weekend.) we're fully prepared for this guy to not really be up on the latest information. How could he be? Nobody's holding benefit concerts or 5k walks for PFFD. It's really not on the radar of the general public. But he is a doctor and I've heard Yale is a pretty good school so let's give this a whirl. Frankly, if he can give us one piece of information we didn't already know AND we get a peek at her most recent x-rays, I'll say this was a success. 

Success!

It should be noted that Dr. Smith was a very nice, intelligent, soft-spoken man. While he was aware of PFFD and it's complications/treatments, his experience with it was minimal and he couldn't tell us anything we hadn't already learned through almost constant study in the past six months. (This was something I was apparently poor at hiding. Afterwards, Kate tells me "you have problem parent written all over you.")
What Dr. Smith did do was to give us the name of the Chief of Medicine at the Shriner's hospital in Springfield. Regardless of Emily's treatment program, she is going to need all kinds of prosthetic work. With these devices costing thousands of dollars and insurance companies being what they are (read: stingy), it's certainly nice to be hooked up with the head honcho of a place that's known for its quality, free work. 

Without question, looking at her x-ray was the part I was most on edge about. I can watch Emily move and play and see that leg kick around and say to myself "I swear there's something going on in there. It's growing, right? Look at it move. It's grown. It's working. It's going to be fine. Right? Right?" But, seriously, what the fuck do I know? Oooh, you took anatomy and physiology seven years ago...you're a genius! What are the odds I'm setting myself up for a huge fall? 

Dr. Smith pulled up the x-ray and immediately I felt better. There was her femur...short and bowed, but looking strong. He pointed out a number of crucial aspects like the apparent development of a good hip joint and knee. He agreed we're still looking at a potential discrepancy of eight inches. Perhaps the most important thing he said was during his discussion of the different kinds of PFFD. "There are multiple classifications and this appears to be a milder case." 

Like I said...success. 

Two more weeks and we get to sit down with Dr. Paley in Baltimore. This will be the true test. 

Quick! Staring Contest! Me and you! Now!

You win. You always do.

A toast.

A toast, indeed. 

What are we toasting? A toast to a possible snow day tomorrow. A toast to the home I am still as excited to wake up in as the day we moved in. A toast to my little Emily who giggles happily whenever I make faces at her. A toast to my wife who laughed until her stomach hurt after I told her that as a child I used to wipe boogers on the wall behind my bed. (It's true. And gross. Don't judge me.) 

But most importantly, I am toasting optimism. I know, it goes against almost everything we here at The Gray Area stand for, but we are talking about real, shiny, giddy optimism. Little Orphan Annie-level optimism. The first feeling of optimism I've felt since my daughter was two hours old and the doctor sat down in front of us with a pile of vague information and a concerned look.

Last week, Kate started calling doctors in search of second, third and fourth opinions regarding Emily's leg. Since her diagnosis, people have come out of the woodwork to recommend a doctor, point out a helpful resource, share a similar experience or just to say a prayer. In our research, we came across a Dr. Dror Paley who founded a limb lengthening facility in Baltimore. He is an expert in PFFD. It's his life's work. People travel from all over the globe for his help with this condition. And everyone says the same thing...he's good. Very, very good. 

Unfortunately, Dr. Paley is no longer taking new patients as he is moving to Orlando in June. He's starting a new facility at the Disney Children's Hospital. Of course, he is leaving behind a capable team that has trained with him for years. We will be in good hands if Maryland is where we choose to be. 

Then he called. 

Dr. Paley, upon receiving an e-mail from Kate, called her from his cell phone at 7 PM on his way home from work. 

That part deserves its own paragraph. What doctor, let alone one considered to be a worldwide leader in any field, calls prospective patients whom he doesn't even know on his way home from work on a Friday???

Kate was supposed to be at work, but decided her co-workers could do without her for a few minutes while she sat in the parking garage and discussed little Emily. 

Dr. Paley asked for information about our daughter. He listened. He gave his opinion. He outlined a treatment program. He admitted it's a little hectic at the clinic these days, could you just come in on a Saturday? The office will be closed, but I'll meet you there and we'll talk about the possibilities for Emily's care. 

I will probably save Kate's voicemail forever. She was as excited as I've ever heard her. It was not the forced positivity that many of us have expressed these last few months. There was excitement and enthusiasm and, finally, confidence. Confidence that we can do this. 

We can do this. 

This will not be a walk in the park. All procedures will take place at Paley's new hospital in Florida. A week for "super-hip" surgery at age two. Lengthening surgeries with four months of daily, painful rehab at ages four, eight and 12. 

But, for the first time in months, I have this unshakeable feeling. It's almost overwhelming. 

We can do this. 

She can do this. 

And, I think...I hope....HE can do this. 

An almost-five month/Christmasy-type picture update: Family, toys and a new swimsuit.

An idea of what it's like.

Sometimes people ask me how Emily is doing. Actually, people always ask me that. It tends to be just a quick, folksy "how's the baby" to which you automatically respond "Great!" Other times, usually during quieter, more appropriate moments, people really want to get in to what's going on and what doctors are saying and what our next move is. What follows is a pretty standard response, quoting the last thing the orthopedist told us which is to say it's still up in the air, we'll take a look in April and start to form a more concrete plan then. 

What I will never really be able to fully express is exactly what's going on in my head. Anybody who's known me at all is well aware that inside my head is a frightening place. It's random, fast-paced and not necessarily pleasant. And that was before I had a daughter whose childhood and the entire future of her physical abilities rested on our shoulders.  

So, if you're really interested in what's on my mind, I'm thinking about this kid. I'm thinking about medical technology and what else maybe on the horizon. I'm thinking about this man and the thousands of people he has helped through his work on PFFD.  I'm thinking about the parents of this little boy as they are just slightly ahead of us on this journey. 

Since you asked, I thought you would like to know.

'Tis the season.

Once again, I've fallen behind in my blogging. What can I say? It's basketball season. It's Christmas season. It's have a nice warm glass of shut your trap season. This is my site and I'll get to it when I can!! I'm sorry. It's also a stressful season. Let's just keep it moving. 

What's new in the world of Emily and all that surrounds her? In case you hadn't heard, she was Baby Jesus. Ahh, that's right, campers. This past Sunday, Ems made her debut as the young babe, wrapped in swaddling clothes, lying in a manger. And she was magnificent. Kate (billed as "Mary's Helper") brought Emily out and placed her in the cradle as the pre-pubescent Mary and Joseph looked on in a "um...is that a real baby?" kinda way. I even taped the entire appearance from the church balcony and promise to put together a nice teaser just as soon as I can get appropriate wiring/enough time/smarter. 

Yesterday was the start of multiple Christmas celebrations as we trekked up to Massachusetts to share the festivities with friends and family. Yet another reason Emily rules...I can dress and act however I want because nobody's paying attention anyway. The second Ems enters the room, the spotlight shines only on her. I love it. And so does my inappropriate sense of humor and affinity for alcohol. 

But it doesn't stop there! Tomorrow will be Christmas with the Conquests, Monday includes a trip to Providence for holiday time with the Kristiansen's and Tuesday is an all Tredwell affair in Hamden as brother Pete and his family make a trip back to the east coast. 

In the meantime, this will be cut short as Emily squirms on my lap. She either wants to play with the computer or eat. Or both. Use your words, kid!

Plenty of good photos are sure to come. 

Invictus

In my time as a writer, I've found that some pieces come together easier than others. Some flow, some find a way and others are the creative equivalent of dry-heaving. In some cases, others take care of it for you. This is one of those times.
This is an e-mail I received from Emily's Godfather and one of my best friends for more than 20 years, Brian O'Dowd.

Tim,

"Invictus" (Latin for "Unconquered") is a poem by the British Poet William Ernest Henley, and it's one of my favorites. I recently learned just why Henley wrote it, and it reminded me of Emily. Here's the gist of it: "At the age of 12 Henley became a victim of tuberculosis of the bone. In spite of this, in 1867 he successfully passed the Oxford local examination as a senior student. His diseased foot had to be amputated directly below the knee; physicians announced the only way to save his life was to amputate the other. Henley persevered and survived with one foot intact. He was discharged in 1875, and was able to lead an active life for nearly 30 years despite his disability. With an artificial foot, he lived until the age of 53. 'Invictus' was written from a hospital bed."

Invictus

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the horror of the shade,
And yet the menace of the years
Finds, and shall find me, unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate;
I am the captain of my soul.

Always keeping that beautiful child in my prayers.

Brian

My apologies in advance.

This post may be a bit scattered but, well, so am I. 

It's interesting how life draws its little parallels. It's the start of basketball season for many in my circle. Everybody is going through the first few days of tryouts, shaping their teams, gauging potential, seeing what fits and what doesn't. After cuts, there is the inevitable run-in with angry parents, frustrated teens as well as the occasional moment of regret where one questions decisions they made. 

Today I got to think about amputating part of my daughter's leg. 

For almost four months we have been blessed to watch Emily grow into perhaps the most beautiful little person I could ever imagine. Her smile is positively infectious. Even when she furrows her brow and looks around in angered confusion, it's enough to draw giggles from anyone in the room. 

But there's that leg. 

We've known about it since she was two hours old. Proximal Femoral Focal Deficiency. Never heard of it before. Never cared that it's completely random. Of all the things I thought might happen to this baby, this wasn't even in the top 50. 

Three months ago, a trip to the orthopedist's office resulted in discussion of the possibility of multiple, painful leg-lengthening surgeries. Or amputation. Nothing you can do now. No hurry. Just go home, enjoy your daughter and we'll see you in December.

Today wasn't much different.

He asked some questions. He poked and prodded and measured. He said things like "significant discrepancy" and described surgeries as "heroic." While I wasn't expecting a Christmas miracle, well...I don't know if I can finish that sentence. 

If I may dispense with the feeble literary attempts, I can tell you we're not much better informed than we were this morning. Doc says when he first started practicing, this would have been an automatic amputation. Right now, the difference between her two legs is approximately seven centimeters, with a projected difference of 20 centimeters, or, just under eight inches. The average leg-lengthening surgery can add five centimeters at a time, followed by a grueling rehab process. Surgeries could begin around age four or five. 

There is also the previously unknown option C. This involves fewer lengthening surgeries, but then shortening the good femur by a couple inches (something done on an outpatient basis.) In the end, she ends up a bit shorter than she would have been had we let her grow to all her Tredwellian glory. Think 5'8" instead of 5"10. 

Or we can amputate. 

I say 'we' like the knife is in our hands. Because, and let's be perfectly honest about this, in many ways, it is. She certainly can't decide for herself right now. Would she ever be able to make such a decision? Would I? Would you?

There are no do-overs here. No re-takes. Maybe we decide to give her a fighting chance and try the lengthening surgeries. She struggles through the rehab. It's excruciating. She guts it out because she's already stronger than all of us. She grows to be one of the most beautiful, thoughtful, determined people you've ever met. She's already faced her toughest fight. The rest of this shit is easy. 

Maybe we decide to give her a fighting chance and try the lengthening surgeries. We listen to her cry as she spends months recovering from the operations. We look at the pain in her eyes. We decide it's not worth it and we amputate. She grows to be one of the most beautiful, thoughtful, determined people you've ever met. Yeah, I've got a prosthetic leg. Pity me at your own risk. 

But what if we're wrong? What if we amputate and there's a sudden breakthrough in surgical techniques or stem-cell research? What if she wanted to keep fighting? What if we're wrong?

Parents make decisions every day that their kids "hate" them for. You can't see this movie. You can't go to this party. You can't take the car. 

What if we're wrong? 

The doctor set another appointment for April. We'll take another ultrasound or x-ray and we'll revisit our options. Perhaps we'll even start to set a plan in motion.

Four more months to think it over.