I was born with PFFD in 1986. My parents discovered the Shriners Hospital in South Carolina when I was 6 years old. Until the age of 18 that had been been my place of treatment. We had been encouraged to go with amputation. My parents felt even at the age of 6 it was my decision. Of course, at age 6, 7, 8 (every time it was brought up by any doctor) I opted out. The decision to keep my leg wasn't even a question and at age 22 I am still happy with my decision not to go with amputation. I think it was the best decision for me personally, although I know that it may not be for others.
We've been getting a lot of spam. Sorry. I've added a captcha for all new registrants so that it will hopefully slow down the users who register to spam the site. I've also blocked what I think are the spamming accounts. If I accidentally deleted your account - sorry - re-register and send me a message and I will re-enable the account.
If the spam continues then I'll add captchas to additional parts as well.
My son Zach has pffd on his right leg. We met with Dr. Davidson on 5/6 and we now have a timeline for his first surgery. Zach needs an inch orthodic list (which i am attempting to accomplish) and he will have two surgeries. The first surgery is to be when he is between 4 -5 years old. Its definately different. i see my little man walking on one set of tippy toes but boy does he move. i really want to get him sandals for the summer but really dont know if i can being he needs a lift. I'm going to try. can anyone share as to what i can expect now that he is moving?
We have a wonderful, active 17 year old boy with pffd, no prior surgeries. Whom has a consultation with Dr. Paley on June 8, 2009.
And first surgery scheduled for August 6, 2009 for Super hip and knee.
Any advise or information would be greatly appreciated.
This will be done at St. Mary's in West Palm Beach.
My daughter who is now 8 yrs old also had billateral PFFD. We are interested in joining everyone for a retreat. We would love to gain some friendship and help each other. I understand MN is an optional for the retreat site. If the retreat is planned, we will join. I also want to put it out there for anyone who lives closer to Ohio and the surrounding states that can't travel to MN, maybe we could set up another retreat for those who can't make the MN trip. We live in KY.
We recently adopted a 15 year old with phocomelia of UE and PFFD. Yesterday was our first appointment with an orthopedic surgeon to discuss the options we have for our daughter at this point. She hopes to continue with leg lengthening procedures despite her hip most likely needing reconstruction and her knee without ligaments. Her foot is fully functional even though her left leg it is 6-8 inches shorter than her right. She also has scoliosis that causes her pelvis to turn.
My daughter, Olivia's, surgery is scheduled for early 2010 and i'm very nervous about it. Could anyone give me some information about super hip and super knee surgery. We have a fantastic doctor here in South Africa. We were hoping to bring Dr Paley to South Africa to perform the surgery, but due to exceptionally high costs it seems impossible. What i really need to find out is what can i expect before and after the surgery. How long is the recovery.
Has anyone found any children's books about kids with limb differences or prosthetic legs? Do you know of any biographies of someone who has overcome limb loss or differences? Just looking for stories to share with my daughter as she gets older. Thanks!
