Hello to all, Happy New Year. I hope you all had a lovely Christmas.
My wife Alex gave birth to a beautiful baby girl on Christmas Day night. Caitlin Eve Bailey was born at 10.11pm, weighing 7lb 5oz. We could not be happier, she is just perfect. We brought Caitlin home on 27th December and mother and baby are doing just great. I can't take the smile off my face. I look forward to the rest of this new year with the two most important things in my life, Caitlin and Alex.
8 PM EST on Thursday Dec 9.
Your chance to ask questions/opinions of one (and usually two) very experienced limb lengthening surgeons and other families.
For more info, refer to previous posts or email : icll (at) lifebridgehealth.org
(Note this is not strictly CFD; the talk also covers fibular hemimelia and radial club hand).
Just a quick reminder that the monthly chat is this Thursday evening (8 PM EDT). Please see previous posts for details, or email icll (at) lifebridgehealth.org for instructions. Be sure to mention that you are from this site, plus give us a few details about age, and type of treatment so far. (We've started requesting that because we've had a few questionable inquiries about the chats lately, and want to make sure we don't let any troublemakers into the chat).
I'm new to this site, so please bear with me. I'm 57 year old with PFFD, who has successfully begun to lose weight by walkiing 3 miles every day. By all height/weight/ charts, I am 'morbidly obese; Can any medically-trained people estimated the ideal weight for a 3'10" female of large build? What exercises are 'safe' other than walking? Also. a visiting nurse told me in passing something re knowing my 'true height' by measuring my arm length. I beleve she called it "Vitruvian' chart. Can anyone explain this? Thanks mary809@sbcglobal.net
Hi! I’m 57 years old, woman with PFFP class 2. I also have a shortened 3rd nerve and muscle in my right eye, so I have no depth-perception. In the 1960’s, I went to Shriner’s Hospital for Crippled Children and my condition was called ‘congenital absence of femurs‘ . Until I was 13, the only treatment I had was ‘observation‘ every three months. IE walking up and down the hall while doctors watched me. I was shown my X-rays but didn’t know what the big deal was. When I was 12, I was fitted for artificial legs called ‘pylons’. I’m sure you older ones know what I mean.
Quick reminder - the next CFD and other congenital limb differences online chat will be next Thursday Sept 9 at 8:00 PM. Dr. Standard will be answering questions about assorted types of congenital limb differences.
We will be using the same password that we have used the past few months. If you need the password or if you need instructions on how to join the chat, please email me at vbrady (at) lifebridgehealth.org .
Hello my daughter will be 2yrs old this Friday, she has Bilateral PFFD. She used to stand up a lot & would walk assisted but the last few months she seems to have pain in her legs. She won't hardly stand anymore or try to walk assisted. She says her legs hurt! She does however do her bear crawl on her hands & feet. I have asked the Dr about it & he says there isn't any reason she should be hurting & X-rays show nothing. I was just wondering if anyone else has experienced this as well. I don't get on here often but I will try & make a point to check it more!
Hi, I am new to this site. Did not know it even exsisted. When I first researched about my PFFD there were hardly any information about it. But I am here for anyone to ask any questions. I am 20 years old , so feel free to ask anything.
My name is Natalie and my 4 month old daughter has PFFD, it's about a 3 inch difference and her feet aren't the same size either. I've been denied SSI benifits once and I am appealing it. I was told that my options were lengthing, amputation, are the lift (to me if her leg only will come mid-way her calf of her good leg, if that). I would think that would be a very high and dangerous lift. I was wondering if anyone else was having or have had this problem with getting SSI.
