Hi everybody,
I am the mother of a 1 1/2 year old girl with pffd. She is our first born and the apple of our eye and at times it really pains me to see her the way she is. She has pffd class C in her right leg but this does'nt stop her from being a naughty little girl. She is a really cute girl and people are attracted to her whereever she goes and they cuddle her. Iknow that the road ahead will not be easy for her and at times i really don't know what to do. My husband and immediate family are all very supportive.
Recently we have got made an extension prosthesis for her, and it has been a month but she still cannot stand without support. She just sits with it and gets cranky if we try and make her stand for too long............i am getting pretty worried and restless. Plz if any of you can let me know of your personal experiences it would be really helpful. i will keep u all updated.
You can mail me at
vipra.srivastava@timesgroup.com
Waiting in antcipation for a reply.
Vipra.
have patience
When your daughter is ready to stand on her own and eventually walk, she will. Each child reaches these milestones at different times.
I was born with two typical legs and I didn't walk until I was 2 years old. My mom says that I was perfectly content with scooting around on my bottom.
My daughter, Olivia (pffd right leg), was a late walker when compared to others with and without pffd. She had no desire at all to crawl until she was 12 months old. I had hoped to get her a prosthesis at 12 months old, but we were told to wait until she could pull herself up to standing by herself. Otherwise it would just "hold her down". That milestone didn't happen until she was 15 months old. I was so frustrated. I just wanted her to walk! We picked up her first prosthesis at the end of October 2005. Olivia was about 17 months old. She hated it at first and we had some setbacks, but with patience Olivia eventually accepted her new leg. When we brought it home, I dreamed that she would walk at Thanksgiving dinner and surprise everyone. Well she didn't and I was bummed. Then I hoped that she would walk at Christmas. Again she didn't and I was yet again bummed. I finally told myself that she will walk when she's ready. She started walking when she was about 21 months old. And she hasn't stopped!
Your daughter will walk when she's ready. It could be today or it could be several months from now. Try to treasure what your daughter is doing now and not think about the future too much.
Beth
thx dear
dear beth,
hi!thx for your prompt reply.i felt much lighter after reading your letter.u know as mothers we often need re-assurance that all will be fine and your letter did exactly that. i cant tell u what your leter did to me..........
anyway we have not got our daughters leg amputated and her prosthesis supports her short right leg which comes upto her left knee without a knee jointand the leg is supported with the help of being tied(hope u are understanding what i am saying) and then there is the prosthesis so it appears as if she has two legs.
what about olivia?
will tell u more and will also try and send u some pics. by the way we are based in india.
take care,
waiting for your reply soon.....(u can also mail me at vipra.srivastava@timesgroup.com)
vipra..........
dear Vipra i read your
dear Vipra
i read your letter and i am not sure if your daughter had the amputation or not...please reply and let me know.I am a mother of a 5yrs old daughter wit pffd Kiara... she just had her first lenghtening she is doing great, i have gone to shriners for second opinion but opted to stay at childrens in Boston please email me if you can or anyone needing info or giving info about this cases i would love to meet other parents that like myself live to see them walk... on their own. Kiara is a lovely little girl very understanding of what's going on so she would also love to talk or even meet children like herself.
don't hesitate.
xaninhakk75@hotmail.com
with care,
sonia.
Prosthesis and walking
Vipra - my grandson is 2 years old and has PFFD of the left leg. My daughter opted for no amputation. His first prosthesis put the foot pointing straight down. He did okay, but we felt he needed more support for the foot and heel, so asked the prosthetist to help. And he did - he angled it a bit so the heel is slightly supported and it made a big difference. He didn't really walk on his own until 18 months but we still thought that was pretty good. I don't know if your daughter has her foot or not, but if so, maybe you could check with your prosthetist and ask him about giving a little more support to the foot? Good luck!
Nancy
Virpra, Baumhover
Our daughter also started with a prosthesis that put the foot nearly straight down. It was painful and caused bruising. Our next prostheticist made a simple crepe sandal/lift that strapped onto a shoe. It made all the difference as it was easy to put on and didn't weigh much. If the foot/tibia/knee are ok - you might want to read up on keeping the ankle flexible as in the Moseley device.
Frank Here,Son Kevin Born
Frank Here,Son Kevin Born 5/5/92 PFFD class "D" Home phone 414-762-3424. My wife and I have come to you must believe you are the biggest badest, in the vally belief. As a parent you should show strenth. You find it gives you the ability to are childs only true advocate. Doctors decisions are difficlt, babysitting decissions are difficult.If you need to talk were available.
Yours Truly, Frank Gratke
pffd start walk
My son , who is now 19, has class c pffd in right leg as well. we helped and encouraged him a bit when he started walking , but one has to be patient and let him find his own time.With pffd we learned to be patient and take things slowly particularly as regards surgery.It will all work out fine
Moseley device?
Hi could you please let me know where I can get more informations about the moseley device? Upon our last visit with our doctor he recommeded putting my child in a prosthesis with her foot pointing downward and I said no because she does have a perfectly good foot and tibia on her affected side. We are also in the process of getting our insurance to approve a visit to see Dr.Paley. I want to provide her with the safest device that we can and I know that having a lift that is four inches is pretty dangerous for a 3 yr.old.
Re: Moseley device?
We went with a prosthosis (extention prosthesis) that is similar to the Moseley Deveice. Like your daughter, our daughter had everything normal from the knee on down. She is now three years old and unstoppable.
For some notes see http://www.pffd.org/node/173 and http://www.pffd.org/node/160. You can also get more information about the Moseley device here http://www.pffd.org/node/62
When are they fitted with a prosthesis???
I'm 38 (PFFD Class D)and my mom is here for a visit. I just asked her what she and dad did for me. She said that I was fitted with a "peg" leg (like a pirate!?!) and was walking by 12 months. By the age of 18 mos, I had undergone the Van Nes procedure and was fitted with my first prosthesis. Mom said she and dad tried to normalize everything for me. If I wanted to go outside and play, then I had to have my leg on. The only time my prosthesis was off was in bed, in water or it was just plain broken.
Dad kept all my prosthesis...I never remember a day without one. I can tell you I wear my prosthesis 12-16 hours per day 365 days a year. It is a part of me...it's my normal. Normalizing my life was the best gift my parent's could have given me.
Warmly,
Carmen