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??
Hey everyone, just wanted to update on my visit with Dr. Paley. In case anyone hasn't read my story here's a little summary. I'm 22, have PFFD of one leg and have never had any surgeries whatsoever. I have wore a long prosthetic my entire life. My length difference (more than I thought it was when I first started writing on here) is 10 inches. I did a little research a couple of months ago on treatment and options when I discovered Dr. Paley for the first time. Most of you have probably heard of him but he does lengthening AND the hip and knee corrections that come along with having PFFD.
It's been a while since i've actually taken time to post something, but life's been hectic as i'm sure most parents with PFFD babies know by now. Olivia's surgery will be taking place between April and June 2010. I just can't believe that the closer the time comes to surgery the more unprepared i'm feeling. I'm reading as much as i possibly can, but still i feel like i'm not really finding someone who can tell me what to expect when my baby girl comes home from the hospital.
So my problem is I have a 4 year old that is not potty trained because she does not want to undo her belt. She goes tomorrow to get a new leg without a belt. When she does not have her current leg on she will go to the bathroom occassionally. I have tried several things to get her to go such as time out(cause she knows when she has to go she just refuses) and taking toys. Can anyone offer me some help. I am desperate.
