If you are new to PFFD - I recommend starting with the PFFD book

We Leave Tonight

Hey all,
we leave tonight to travel to the city for toms appointment tomorrow morning,we are staying in a hotel, id like to say im excited about staying at a hotel as we never do!, but the truth is im worried sick and feel sick to go with it,can anyone who reads this just say a little prayer for Tom and us for while hes under general anestetic, if they get time, thanks a lot
love and best wishes Sally-ann
x

My Little Angel....

My first and only child Kalyn was born on 03/01/06. I was told during pregnancy that my daughter was a dwarf and or had a broken leg. It made for a very emotional pregnancy. My little girl was born and taken from me immed. and put into "Baby ICU" for 8 days. No one could figure out what was wrong with her left leg..we were sent to Shriners and within a short amount of time they diagnosed my little baby with PFFD in both legs and Fibular Hemimilia in both legs as well. She also has 4 toes on each foot (it made for an adorable birth certificate). I am writing this with tears in my eyes bec/ she is now 3 months old and the bigger that she get the more real her condition becomes to me. I just dont understand how I am suppose to teach her how to be ok with this since I dont even know how to be ok with this..I felt like my husband, myself and my family were the only ones going through this until I found this site. I am so happy to have read the letters from so many. I am so worried that she is going to have a harder life than other kids. I know that I should not say this is not fair since life isnt fair but it just isnt. No child should be born with problems..I would really like to be in contact with others that have children that have PFFD and children that have grown up with PFFD. I am having a very hard time with this. I dont think that I will have any other children bec/ I am afraid that he/she will have the same disorder that Kalyn does. She is the love of my life and I will do anything for her. She is my little angel. "God only gies special babies to special people that can care for them".

Arthrogram

Hi hope i find everyone well,
The date for Toms hospital appoinment is approaching the 8th June, i was just wondering if anyone had gone through an Arthrogram at all, and if anyone could let me know what to expect, and outcomes?

My best gift arrive on Christmas day...

Hi my name is sonia and i am the mother of a beautiful little girl named kiara. Kiara was born at full gestation and we found out that she was missing a toe the day she was born christmas day December 25 of 2000, to our surprise Kiara wasn't just missing a toe she was also missing her fibula in her right leg and she had a small bowing and also a shorter femur. Since then I did all the research i could, we visited Children's hospital in Boston and we drove up to shriners hospital in Springfield. We opted to have physical therapy at home and kiara started to walk with a shoe lift at age of 16 months old, She had a small surgery at 11months old to release her tendon and again at age 3. She is now 5yrs old and after meeting with several doctors we decided to do her first leg lenghtening of 8cm. Its a road that its hard to walk on but so far kiaras leg has grown almost 2cm, she has pain and pin care is far from fun...

Our little angel has clacc c Pffd

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.

Adult with PFFD

Hello! I was born with PFFD affecting my left leg. I was also born with my left arm ending at the elbow and my right arm ending below the elbow with two fingers. I welcome comments/questions from experienced persons with PFFD as well as youngsters and parents. I do not easily offend and no question is too personal.

Tricycle

Does anyone have any experience or recommendations with selecting a tricycle for a child with PFFD (unlateral)?

I am trying to find a tricycle that will work for my son who currently wears a non-bendable prosthetic to lengthen his right leg to the same length as his left.

I have seen a few items such as the amtryke, some hand powered tricycles, etc., but was curious if anyone had used on/seen one used to give further recommendations as to which may be the best to pursue.

Update to new server and software complete

The migration to the new hardware/software is complete - let me know if there are problems.

What changes would you like with this site, pffd.org? For example - someone posted recently about how all the medical pictures show unhappy kids are while many have written that the opposite is true (Its certainly true that for our 3-year old daughter life is wonderful, filled with giggles, and PFFD is a non-issue) - In response I was thinking about adding a media gallery so people can upload happy images. I can't guarantee everything can be done - but here is a good place to add comments to let me know what pie-in-the sky things you might like.

Dr. Paley or Dr. Herzenberg

For people who have been to the Baltimore surgeons...I was wondering if you saw just one doctor on your visits there or are you exposed to multiple ones. I have heard great things about the group there and wondered if they work as a team or if you just stick with one person. Do people have preferences over Dr. Paley or Dr. Herzenberg?

Plasma Car - Ride on Toy

We just wanted to let people know about the Plasma Car, a ride on toy for kids. It's perfect for kids that have difficulty pedaling other ride on toys. There are no pedals and no batteries. Kids propel the car forward by swiveling the steering wheel back and forth. It drives on a smooth, flat surface. Our 3 year old daughter has bilateral PFFD and wears a prosthesis on one leg. My husband made some adjustments to a tricycle to see if she could pedal it with one foot, resting the other leg on a stationary rod. However, it has been difficult for her to do by herself at this point. She loves to play outside and we had been searching for a ride on toy she could control by herself. I saw the Plasma Car in a toy catalog and got it for her birthday in February. She loves it. She can get on by herself, put her legs out straight in front and start turning the wheel to make it go zooming down the driveway and around in circles. It is a wonderful ride on toy for any child that has a difficult time with pedals since you control it completely with your arms. All kids love it. I just noticed that Target is selling it online now. You can search the web to see pictures and even a demonstration of it in action.

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