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. 

11 comments:

Phil Demand said...

This is fantastic news. I just the m.c. hammer dance. Not joking.

AS said...

Phil dances...I'm old and weep with joy! I'm actually excited about a POSSIBLE move to NE. I'm shocked about the Disney backout. I'll take Boston as an alternative!
You two must be so inspired. Gosh, not long before the babe starts standing either! So glad you are safe and home. Yippee!!!

Sarah Kristiansen said...

Best. News. Ever. Go get 'em, Ems.

tgc said...

The hair on my arms stood on end. This is such great news! We'll continue to keep you in our prayers.

Kathleen said...

Have been smiling since we got your call yesterday! Great news! Love you guys XOXO

Ashley said...

Timmy, was SOOOOO happy to read this...I have actually re-read it a few times these past couple of days, just beacuse it makes me feel like the world is a hopeful place :) I vote for Boston too; got a room ready for you guys, and weird little plastic things to baby-proof my house---bring it on! xoxo Love you guys, Ash

charles petraske said...

Tim-- Great news about your Daughter (what amazing PICS, must be a great girl. Our son is in the same boat. You don't know me, my name is Charles Petraske--our son is Jake. He has PFFD right leg and is 9 months old today. We are going to Dr. Paley and following him wherever he goes. Thanks for the update on the relocation saga. PRAY FOR NE, PRAY for NE. Paley's fiancee is from Cooperstown, NY. By the way, I am from Saratoga Springs, NY. We have much to talk about and maybe we should be friends--our kids will most likely be in surgery together since they are the same age. email:
Chazmataz40@hotmail.com.
E-mail me and I will give you my number. Take care, and best of luck.

charles petraske said...

Tim-- Great news about your Daughter (what amazing PICS, must be a great girl. Our son is in the same boat. You don't know me, my name is Charles Petraske--our son is Jake. He has PFFD right leg and is 9 months old today. We are going to Dr. Paley and following him wherever he goes. Thanks for the update on the relocation saga. PRAY FOR NE, PRAY for NE. Paley's fiancee is from Cooperstown, NY. By the way, I am from Saratoga Springs, NY. We have much to talk about and maybe we should be friends--our kids will most likely be in surgery together since they are the same age. email:
Chazmataz40@hotmail.com.
E-mail me and I will give you my number. Take care, and best of luck.

PaleyPatient said...

Does anybody know when we will find out where Dr. Paley is going? I'm dying to know! His soon-to-be wife is from upstate New York-- perhaps that will encourage him to focus on that area? Let's pray that he stays somewhere on the East Coast, but in this country no doubt. He is from Canada and went to the University of Toronto. Canadian socialized medicine will make it very expensive for all of us to be treated there. Here's hoping for Boston as an alternative!!

PaleyPatient I said...

To be not serious today I could say that sometimes I regret that Dr. Paley doesn't treat via internet -just only his own eyes ...to be serious I could say that we all will be serious - in time when treatment will start & especially for you Tim and your wife- the road will be winding but maybe not so hard with good map.

Phil Unghire said...

When Tim told me it made my week. I was hoping that the news would be good and it is great to hear that Dr Paley believes “this is very manageable”. Let’s hope for the Northeast. Do you think anyone has suggested Newington’s Children’s Hospital? Could we be that lucky! For Emily, Kate and Tim you will always be in my thoughts and my prayers.