Hi! iI am a proud mother of Kashvi, my 28 months old daughter who has pffd in her right leg. She was fitted with a prosthesis in April 2006. She has started walking but not yet independently.......... at times i feel this is slow development , but i do not want to push too hard. As i am working i practise with her for 2 hrs after coming back.
Is it okay if she takes this much time? I am getting worried and do not know who to take advise from? As many of u r experienced please tell me how to deal with this.
Plz feel free to mail me on: vipra.srivastava@timesgroup.com
Hello everyone! I have an 18-month-old daughter with congenital short femur. We have taken her to several different Dr's , including Paley in Baltimore. Currently, three of the Dr's we have seen
recommend waiting until she's older (6 or 7) to do the first lengthening (she will need a total of 2 lengthenings). Paley recommended doing it by age 3. Our daughter functions very well with a
I am 11 years old and I love to skateboard.I am in 6th grade and have one happy sister.I am in love with Duke University and I realy want to graduate from there and become a pediatric orthopidic surgeon.I have a home page on matmice.com and my adress is matmice.com/home/stingrayman.I also have one dog , his name is mavrick.It snows a whole lot were we are so I bring him in sometimes.I have tons of freinds.I have been on two crusies both of them where norwegen cruise lines. I have been to 8 contries out of my own usa.I have been to Antigua,Puerto Rico,Camen Islands,St.Thomus,Jamaca,Mexico.
Hi All
I am glad to have found this site and have been reading all the stories and looking at the pics of all these cutie pie babies. So I thought I would share my story and see if I could get any input.
My daughter Isabella is now 5 months old, almost 6 mo. She was born 2 months early and I knew before she was born that her femurs were short. At my 22 week US it showed that her femurs measured at 16 weeks. They sent me for level 2 US, and it read the same short femurs. They were consistently behind but showed growth. My last US lasted over 1 hr and was painful. And she was born about a week after that. Even at that appointment the doc tried to convince me that I should consider not having the baby. That she could have all kinds of problems besides the femurs. Needless to say I listened to myself and others and to God and had the baby. She is beautiful. Her legs are little and it is just the femurs. They xrayed her at the hospital that she was born and their conclusion was that her femurs were broke. She was also born with a cracked rib. But they said that she would be fine that there were no other problems and to see a specialist. She was in the NICU for a month and 3 days after she left we were at Child. Mem in Wisconsin.
hi, i am a 23 yr old pff. im not sure what class i am but i do know that when i was a baby an operation was performed to remove my foot, and i was left with a stump. i grew up very very normal, so for any parents out there who might fear for their children, dont. my mother treated me like a regular kid, and as long as you do the same, your child will grow up as normal as the other kids. i never had an issue regarding my leg, or rather the lack of my leg. i was very active growing up and till this day, i do not really consider myself any different than lets say you. i am in the process of getting a new prosthesis though, which is how i came across this website.i was reading a few of the comments and figuered, let me sign up, hey maybe i could offer some advice, be a shoulder for someone to lean on,since ive been "around the block".
I'm really new to the boards, to be exact 2 hours and a few minutes. My name is Carmen, I'm 38 (okay--39 in October), Registerd Nurse (currently I'm a stay-at-home-mom), married, mother to two healthy beautiful children...and I have PFFD. I was one of the first (so I'm told) experimental Van Nes procedures to be EXTREMELY successful at the University of Kansas in 1969. I've been living a very happy, sucessful lif.e
I don't know if I can be of any help to anyone, but I would be willing to try to help answer any questions/concerns. I've always been open about my PFFD.
Oh, forgot to say, Right lower limb-complete abscence of femur and fibula. I also only have 4 toes!!!
At our specialists request we have been doing rotating, straightening and stretching physical therapy. The therapist thought a little foot splint might be helpful as Cody's foot is bent. The Dr. says we can do it but it will never fix his foot. ???? Now after a month and a half of 3 times a day exercises the Dr. says it really will not help anything before surgery. Has anybody done pre surgery physical therapy? By pre surgery I mean 1-2 years beforehand. If you have done therapy- what kind of exercises? I know every case is different, just trying to get an idea of options for the therapist. This is her first pffd patient.
Hello and help . My son is two months old and has PFFD and FD.Our specialist and therapist are both with Children's Hospital in Denver. Our family is doing fairly well emotionally, but my head is swirling from the medical terminology. I also have lots of questions on care, specialists,therapy, what to expect the first years as he grows and some ideas on how to deal with the looks and questions from strangers. Due to my job I deal with the public alot and my children are with me most of the time. Any help will be greatly apprectiated and thank you in advance.
Hi our daughter is three and we live in mississippi. Like so many others that I have read about she was diagonosed at first with osteogenisis imperfecta after a visit to our nearest genetisis in memphis we were happy to know that she has pffd. We have been kept in the dark for quiet some time. Because I am an LPN second and a mother first once the initial shock of having our fourth child at forty wore off I begin to question the choices that our doctors are making and have come to the reality that they know no more than I about this. I had to recommend for her to have daily range of motion exercises at birth. I had to request physical therapy( and God blessed us with an angel named Regina)
My baby is just one month old and has PFFD affecting her right leg. It hasn't been classified as a,b,c,or d yet. She has a fully developed leg with foot, but missing her knee cap and the femur and tibula are smaller and the femur is bent. It appears to function like her other leg. Any advice while we impatiently wait for our apt with Dr. Ingles in July at Mary Free Beds Limb Def. Clinic in Grand Rapids Michigan. I am struggeling to stay positive. I am scared for all that she will have to go through, emotionally and physically. If anyone has any recommendations of doctors in Michigan for treatment or near Michigan please let me know.
