My son has outgrown a lot of pants, and I hate to "throw them out" I sewed the left leg so it is a few inches shorter. Nicholas has bilateral pffd, left leg. Does anyone have a young boy could use his "hand me downs"--pants. All are in excellent conditon, very gently worn. All the other clothing can go to family members and others but the pants! I'll be happy to send if they could have a new home.
I was just curious to see if anyone else that has undergone limb lenghtening is suffering from chronic pain? I'm only sixteen, but ive had about thirty surgeries. I had the Phoenix implant. Two of them actually, as the first failed. The Phoenix is an internal prosthetic which lenghthens via magnet. Anyway, i remain in constant, aching pain. Has anyone else whose undergone limb lenghtening, or any other procedure, suffered from such pain? how do you deal with it?
Does anyone live near the Portland area with a child who deals with PFFD? Do you go to the Portland Shriners? We would love to be in contact with other parents and kids who deal with all the stuff we do. We have a nine year old daughter who would love to meet other kids with her same issues( especially girls). Let us know. :)
My daughter is nine years old. She is an absolutely beautiful child who was born with PFFD. She is a uni and it affects her right leg. We recently (the beginning of April) went through her third surgery. She has had 2 hip surgery's and the most recent was the Van Nes Rotation Plasty. We were blessed to have one of the physicians who is tops in this particular surgery perform it. Dr Krajbich is an absolutely fabulous doc!
HI! I recently found out I'm pregnant. This is my first baby! My husband and are so excited! Just have some questions about people experiences. Did anyone have to be on bed rest for any period of time? How did it affect your balance or issues with your shorter leg?
My son is almost 3 and is due to have super hip/knee surgery in June. I am really struggling with what to tell him about his surgery. I don't want to scare him with too much information, but I also don't want to risk him waking up from surgery in the spica cast wondering what happened to him ( I know that he is going to freak out about the cast ). I know that a lot of you have been through this, or will be at some point, and I am hoping that you can share with me ANYTHING that might help make it easier.
Hi. We live in Fairbanks, and my beautiful 6 month old Emmaly has unilateral PFFD affecting her right femur. We are planning to move to the Olympic Peninsula of Washington this summer (we have family there), and I was wondering if anyone here lives in that area and/or knows of any good doctors, facilities, support groups, anything in the Seattle area.
Thanks!
-Rachael
When I was 5 months pregnant, we went in for the standard ultrasound to check for facial deformities, presence of organs, and measuring of the femur to check the actual age of our baby. At that appointment, we found out we were having a girl, and the technicians said everything looked fine. At my next appointment with my OB doctor, he told me that it looked as if her right femur was a little shorter than the left one or maybe bent. He ordered another ultrasound, and after that, he told us we could go down to Anchorage to have the closest specialists take a look with better equipment.
I remember visiting the site 2 1/2 years ago with so many questions in my mind as to what life our daughter would have considering that she has pffd in her right leg........ The personal stories of so many parents gave me hope that her life would indeed be beautiful if we give her love and let her live freely.
I was wondering if anyone has ever purchased any kind of adaptive toys for their children. I am looking to get my son, 2 yrs old, a tricycle that he can actually ride. I have done some research on "hand pedal" bikes and found that they are REALLY expensive. I was hoping that maybe someone knows someone that might be looking to sell one that their child has grown out of. Currently my son does ok with his bike, using his "long leg" to scoot the bike forward...but he wants the bike to go like his sisters does. If anyone has any info. or advise it would be appreciated. Thanks, Jen W.
