All kinds of stuff.

How else can I title this post when so much has occurred in recent weeks? 

First off, and perhaps most importantly, Dr. Paley went and made it official. Scroll down to my last entry to find the link to our future destination in West Palm Beach, Florida. The good doctor e-mailed his new contact information at St. Mary's Medical Center a week ago Sunday, a move that touched off a little excitement as well as some pre-game jitters. For the longest time, I could put off the reality of this situation by playing the "well, let's just wait to see where he sets up before we start making plans," card. It's a convenient way to delay accepting the inevitable. Now, with nothing but a calendar between Ems and her first surgery, everything takes on a different feel. I'm sure I'll be discussing that ad nauseum in the coming weeks and months. Next, on a very special "The Gray Area"... 

In the meantime, our girl continues to grow exponentially. She turned nine months old this past Saturday and will have a check-up this Wednesday. They'll tell us what we already know...she's huge. And smart. And good-looking. Hey, we're paying them. You tell me what I want to hear!

But before she hit the nine-month mark, she hit a few milestones. Besides popping out a couple teeth (pictured below) she has started crawling. It's official...no more leaving her in the middle of the carpet with a pile of toys and knowing she'll be there when I look up. She's on the move and looking to climb. Oh, did I mention she's pulling herself up to a stand, too? Yup. She's doing that as well. Bolt it all down. Her reign of terror has commenced. 

With all this new ground to cover, we will clearly have to move our appointment with Dr. DeLuca up a bit. It originally seemed safe to meet with him at around 11 months to get her fitted for her first shoe lift. But this kid is obviously a game-changer. 

We should probably get used to it. 

West Palm Beach, Florida.

The latest rumor is that Dr. Paley will be headed to St. Mary's Medical Center in West Palm Beach, Florida. While there is nothing official on either the hospital website or his own personal page, our inside sources (yep...I have sources...my journalism professors would be so proud) are saying that's his destination. And after a quick google search of the area, it would certainly make sense. Downtown Baltimore or palm trees and long sandy beaches? I'll take "move south" for $100, Alex.
Granted, none of this affects Emily's schedule, as her super-hip surgery won't happen until summer of 2010. In fact, it's probably beneficial to have the move take place now, giving Paley more than a year to get everything set up to his liking before we go under the knife. Nevertheless, it's nice to have an idea of what's coming down the pipe.
More to come once something concrete is announced.

DeLuca's on board.

Walking into our appointment on Monday, I wasn't sure exactly what to expect.
I thought about a long wait in the lobby. I thought about a minor confrontation when we didn't see eye-to-eye with the doctor's opinion. I thought about where we would go to get something to eat afterwards.
But I really wasn't terribly concerned about any of it. We have the Ace of Paley tucked up our sleeve. We're feeling good.
But DeLuca surprised us. We discussed Emily's x-rays and what the possibilities were. He talked about how difficult lengthening would be. We told him about our meeting with Paley and the confidence he had expressed. He agreed. It's all possible. We can do this. And he can help.
DeLuca is very different from Paley. He's more conservative. He didn't bathe us in sunshine or make any bold promises. He made sure we were aware of exactly what lay ahead, for good or ill. We knew.
In the end, we just wanted to know if he can be there for us. He's close by. He's experienced. He's connected. And he's on board.
In about three months, we'll be seeing him again. This time, to help Ems get fitted for a shoe lift or prosthetic or whatever it is that's going to help her motor around.
The team is coming together.

How things change.

I find it hard to believe we have come this far. 

This weekend we saw the baptism of Emily's first BFF, Kate and her family took part in their annual Easter Egg Hunt up in the Berkshires and I divided my time equally between basketball and trying to fight off this poison sumac/oak/ivy that seems to be taking over my right arm, Matrix-style. Just living the suburban dream, we are. 

Oh...and we have an appointment with Dr. DeLuca tomorrow. 

You may remember this gentleman. He's the local orthopedist we've been meeting with since Ems was two days old. He's kind, intelligent and well-respected. 

He also said it would probably make the most sense to amputate. 

This appointment was scheduled months ago. We were told to go home and enjoy our daughter. Come back in April and we'll see how she's progressed. 

Then we met Dr. Paley. And our world changed.

We have been consumed with joy and confidence since that meeting six weeks ago. Something about a surgeon looking you dead in the eye and telling you what he can do...what he will do...to say it was a transcendant experience might only understate it a little bit. 

And if I may wildly oversimplify four major surgeries and years of recovery for our little girl, all that was left to determine was where Paley would be setting up his new digs so that we could begin making arrangements. The latest rumor is that he will be heading to a different hospital in Baltimore or somewhere in Florida. So apparently not much has changed since this process began.  

But let us deal with the immediate future. Tomorrow, Dr. DeLuca will look at Emily's legs and probably tell us how significant the discrepancy is going to be and how amputation continues to make the most sense. We will thank him for the information and talk about our meeting with Dr. Paley. We can only hope he will be supportive as it would be a great help to have him in our corner. Regardless, we are on the attack. Join the fight or get out of the way.

Just a short time ago, my stomach would have been in knots this close to an appointment. I would have been distracted and, at best, distant during work tomorrow. In the parking lot at the doctor's office, I would have done my best not to tear up as I prepared for the worst. 

We're nowhere close to the end. But we have come so far. 

Her first March Madness.

This is quality father-daughter bonding. 

Mother's choice.

I think this new camera is working out pretty well. 

Mommy has a new camera.

"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.