Hi My daughter is 21 has PFFD (Left leg) She delivered a beautiful boy on Feb 27. Just to let everyone know, everything went perfect. She went thru 38 hrs of labor, but she handled everything so well. Other than the loooooong labor, the delivery was natural and my grandson was perfect. He is growing and growing. I forgot how fast they grow. Thanks to the people that wrote to me with encouragement.
My daughter, Olivia (she turns 4 in June), has her first lengthening surgery scheduled for May 9th. Her surgery will be performed by Dr. Davidson at Children’s Hospital of Philadelphia (CHOP). A year ago, during a check-up with Dr. Davidson, we were told that a pin left in her hip/upper femur (from her super hip surgery) needed to be removed prior to lengthening.
I am in really desperate need of finding someone who has a daughter with unilateral PFFD that has already been through potty training. If anyone can give me any advice I would really appreciate it. Hope everyone is doing well.
HEY EVERYONE.... I'M AN ARTIST & MY WEBSITE HAS SOME DRAWINGS HAVING TO DO WITH LIMB DEFICIENCY AND PFFD... THE DRAWINGS ON THE SITE RIGHT NOW ARE KIND OF DARK, BUT I HAVE SOME 'HAPPIER' STUFF THAT I'LL BE POSTING ON THERE SOON. WOULD LOVE FEEDBACK.
It was brought to my attention that a facility which offers medical services either signed up a PR firm or took it upon themselves make posts to this site to solicit members of the PFFD for treatments and to use viral marketing to promote a particular mode of treatment by their organization.
I'm 31 yrs old and my parents decided on amputation of my right leg (severe PFFD and severe tibia/fibula marlformation). There was really no other option on that side because of the severity. I wear an above knee prosthesis and function just fine (I have a 5 year old and a 4 month old). I have PFFD also on the left side, but only have a short femur, the lower part of my leg is pretty much OK. I did not have limb lengthening on that side (because there was really no necessity, since there was no other leg to match it).
I'M TRYING TO GET A SHRINERS HOSPITAL ALUMNI GROUP TOGETHER... ANYONE ELSE INTERESTED??? I WENT THERE FROM INFANCY UNTIL I GRADUATED FROM THAT SYSTEM AND WENT TO A PRIVATE PROSTHETIC FACILITY AFTERWARDS. I ALWAYS FIND THAT PEOPLE WHO WENT TO THE SHRINE AS YOUTHS ARE PASSIONATE ABOUT STAYING INVOLVED. I THOUGHT IT WOULD ALSO BE COOL IF CURRENT SHRINE PATIENTS COULD CONTACT US (JUST AN IDEA) FOR SUPPORT. IF ANYONE ELSE IS INTERESTED IN THIS IDEA, PLEASE LET ME KNOW.
Hey everyone! I'm 31 yrs old, a mother of 2 and I have bilateral PFFD with AK amputation. I just wanted everyone to know about this cool new website called www.360oandp.com. If you become a member (it's free) you can communicate with other amputee members. There are a bunch of cool articles on the site (see 'intimacy as an amputee' and 'pregnancy and parenting') and you can also email them for technical questions on amputations/prosthetic fitting.
I am the mother of Lilly who is 5. She has bilateral PFFD class D. We have met one amazing family in Texas so far and would love to meet others with the same scanerio Lilly was born with. Would love to chat about the children and get to know eachother. Thanks and I am looking forward to being a part of this website...first time.
