PFFD VSG2

Hi there,

I was wondering if anyone out there has a little girl or knows a little girl with Bilateral PFFD Class C/D who is in need of some trousers/pants. I have been sorting out all our baby things and came across a bag of tights and trousers all of which were shortened/adjusted for our daughter. The sizes range from 3 months to 2-3yrs. I'm happy to post them anywhere in the world they are needed so please do get in touch.

I can't tell you how i've been dying to tell everyone about our news, but i was waiting on confirmation from Dr Paley in America before i sent out the note to all our family and friends. So here goes.

Date : Thursday September24
Time: 9:15 PM EDT (Note that this is the time zone for Baltimore, MD or Washington, DC)
Place: http://www.chatzy.com/600868137410
Temporary password: lldtest
Day of chat password must be requested by email a few days prior to the chat if you don't already have it

Hey everyone its been awhile since I've been on the website, anyways let me tell you alittle bit about my self I am a 22 years old female with my left leg amputeed. When I was 1 year old I was I got my first surgery. and after that I was told that nothing else could be done to make me walk better, well that was what my parents said. All doctors always said to me and my parents that my condition is so rare that alot of the doctors didn't want to miss with it. I finally found out about Dr. Paley that he was moving right around the corner from me. I called and set an appointment.

I am a long standing patient of Dr Paley. I took a break after highschool to get college done with before we finish the lengthening and hip and knee replacement. I am looking for information about the procedure, surgery, and recovery of the hip and knee. Also the few I have read on here talk about a spika cast. Is this always the case? Thanks!

Hello all and just a quick note to say that I have been so busy with all the kids home for the summer I have had no time to sit down and relax....THANK GOD school started today. All but one and he starts tomorrow. I will be glad to get back to a "normal" day if that possible. Well I have missed talking to some of you. Take care and chat please.
Barbara

Choosing the type of surgery that my daughter will have to face seems like a daunting task. For those of you who have been faced with the choice of bone lengthening or amputation, what did you ultimately decide to do for your child? What led you to that decision? Are you happy with that decision or do you wish you had chosen a different option? (My daughter is 6 months old and has been diagnosed with PFFD in her left leg.)

Whenever I talk to people about my daughter's condition (unilateral PFFD), they ask if I know how many people are affected with this since it is something they have never heard of before. Does anyone have any statistics on the percent of the population that has PFFD or other similar stats? I know I saw them somewhere months ago when we first learned of our daughter's condition, but I can't seem to find them now. Thanks!

What: Dr. Standard, Head of Pediatric Orthopedics at the International Center for Limb Lengthening is hosting an online chat.
Date : Wednesday, August 26
Time: 9:30 PM EDT
Place: http://www.chatzy.com/600868137410
Temporary password: lldtest
Day of chat password must be requested by email prior to the chat
You must also register with Chatzy in order to verify your email address.

Sami is starting Kdg. on Thurs. She is SO excited!! So far, Sami hasn't had any issues what so ever about making friends. However, lately, she has been more aware of people staring and...at times...can be a bit, well, let's just say, a little annoyed about it. Other times, she just gives a full medical run-down and explains that all this makes her more special.

What I am debating is taking to the class??? Do I go ahead and talk to them (with or without Sami there), do I wait and see if it's needed? And, what do I say?? Any advice from those of you who have been there??

Thanks!

Libbi