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.