Saturday, February 21, 2009

"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. 

Monday, February 16, 2009

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. 

Saturday, February 7, 2009

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. 
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'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.