Hi everybody! My book, Imagine...Amazing Me! is available. Some of our very own children are photographed in the book. I would love it if you could share your thoughts on the book if you received a copy.
My daughter, Eva, just had the super hip surgery on January 16th at Mount Sinai Hospital in Baltimore. Dr. Paley performed the surgery and, though it was an agonizing 9 hour surgery, it was a success and her hip looks perfect. She has been in a spica cast for 11 days now and we have had no problems with soiling of the diaper (knock on wood). So, I thought I should share my diapering technique for those of you who are going to be going through this.
I'm sixteen and i've been wearing a shoe lift for about fifteen years. Last year, i had a extension prosthesis made. For a reason, i feel like people are still looking at me. I really don't want people to think that i want to do this because i want to be normal. I just want to feel confident about myself, it's hard in your teen years. I know amputation isn't a easy decision or a easy process, but i just want to explore the options i would've taken or I could take. I know a little bit about the Symes Amputation. More so the appearence of the prosthesis.
We are a medium sized family (6 children) in Texas that is hoping to add more children by way of adoption...specifically children in the foster care system. There is a little girl in a neighboring state with bi-lateral PFFD. Her bio states that she has no femurs, that her knees are just under her hips and her lower leg is much smaller than "normal". She is 5 years old....approx. 27" in height and approx. 24 lbs. I sent an inquiry about her today to the folks at human services and am eagerly awaiting their reply.
My daughter, who is 2, is having the super hip surgery by Dr. Paley on January 15th. She is having an MRI in December. Have any of you had any experience with the sedation and the MRI? What can we expect? Also, have any of you had to donate blood for your kid's surgeries? Any advice would be appreciated.
Hello! I've posted on this web site before. I am now 55 and would like to know if anyone out there with PFFD is older than me. When I was born in Texas my parents were told that me and a girl from Dallas were the only ones in Texas at the time born with this deformity, but thay didn't have a name for it then and I still come across doctors that don't know much about it.
As I approached my early 20ies I encountered my first situation with acrotomophilia. My parents had never heard of it and I realized the other day that it should probably be brought up on this site, especially as teens with PFFD use the internet and may meet someone at a much younger age than I did.
SO.....NOTE FOR PARENTS OF PFFD AMPUTEES:
Acrotomophilia is an intense desire for one's partner to be an amputee. Acrotomophiles typically have a sexual desire for amputation as the basis of the attraction. (Yes, much like some men like long legs and women like tight abs....)
My name is Sinead and I'm sixteen. I would like to know if women with PFFD had gotten pregnant. I have Sacral Dysgenesis and my doctor said that can be a factor on me not menstrating. If any women had problems with their pregnancy. If any women have Sacral Dysgenesis please contact me.
