The goal of this book is to give parents of children with PFFD and those with PFFD a guide so that they can plan ahead and prepare for events that they may encounter. The idea is to create an organization as a time-series - similar to good books like "What to expect when you are expecting" and "What to expect the toddler years."
This has been built up from the page written by Mike Malloy in "A Parent's Guide to PFFD" (archived here) now re-organized into this collaborative book format. As he put it when he first wrote the guide
Disclaimer: The author of this document is not a doctor. I am just a parent of a child with PFFD who is very frustrated by all the hard to understand medical papers about PFFD. This document is my attempt at trying to describe PFFD in easy to understand terms. By no means is it to be considered medical advice. All the PFFD experts will tell you that each case is different and needs to be judged on it's own merits. Please consult a doctor for the best advice.
Even though Mike wrote the guide as a parent of a child with PFFD - the information was well written and well documented. Its a good model to maintain. Other PFFD.org members are encouraged to create their own chapters or add to existing pages - please note that this is a collaborative effort and so good communication among the PFFD community will help this project immensely. If you see something that you believe to be a factual error or see text you would like changed - it is good etiquette to contact the author before modification.
Links to following pages are at the bottom of each page.
You can click "next" to read each page in order or skip to subsections by following the highlighted titles/links.
Comments
illustrations
ever think about adding illustrations to this? i illustrated a similar book for a tampa children's hospital on 'what to expect' for congenital limb deficiency. i'd love to be involved.
Sound's great
I think that's a great idea. Send me a private message and we'll set that up.
West Palm beach stay for Lengthening surgery
We will be going to have a surgery with Dr. Paley in West Palm Beach. Can anyone help with where to stay because we are not from there but will be there for 3-4 months. Any help would be much appreciated.
Thank you
hotel outside of the hospital
hotel outside of the hospital or Quantum House
1st surgery
my son michael is 2 and he will be haveing his 1st surgery on his hip.... it will be on dec 13th and i am so worry that i am not going to know what to do...but all i can do is pary and hope everthing is going to be ok... so everyone please keep my son in your parys.... thank u... if anyone can tell me what to look for or let me know what the out come is.... i love to here about it
A lot of frustration cause he
A lot of frustration cause he doesnt understand. my sister has had the surgery and its harder on the families more so than the actually patient. He will need patience and games or puzzles to do while in recovery process. Gifts are good as a calming process since you cant go outside and play. Usually they recover fast because there determination is higher than an adult ever can. Im 17 and ive helped raise my younger sister with my parents. The make you wanna be strong willed more than anything. Good lucka nd everything will go perfectly. Dr.Paley is an amazing doctor and will take care of him. God bless you and your son. Prayers are with you.