My 17 month old boy, Isaac, has a 1 inch shoe lift. Just wondering if anyone who has used shoelifts goes to a specialist that makes lifts specifically for people with pffd? The man we have gone to for lifts has never made one for a child before and also, he only makes them typically for people with very minor discrepencies. Any advice on this subject would be appreciated , thanks, Katie
Hey, My name is Megan Miner....I wrote my story about 3 years ago when I joined and decided it was time to re visit this site and update yall on all the exciting stuff thats happened to me since i left yall for about 2 years. For those who don't know my story, I'll give you the cliff notes version. I am bilateral, class D. When I was a little, the doctors wanted to amputate both of my feet and one doctor Dr. Tosi refused. She said she had a gut feeling that if she moved the mucsles around in my feet that maybe something extrodinary could come out of it.
Quick reminder since most of the details are in previous posts. The next chat on PFFD / CFD and Fibular Hemimelia is this coming Thursday. Dr. Standard from the International Center for Limb Lengthening will be hosting this week. This is a great opportunity to ask a very experienced limb lengthening surgeon questions, and even have him review x-rays if you would like.
For more info please contact icll (at) lifebridgehealth.org and give us enough background info that we know this is a 'legitimate' congenital limb differences request (vs the "I just want to be taller" requests we also get).
My daughter was born with unilateral PFFD. It wasn't caught on any ultrasounds, so we were quite surprised when she was born. She is such a delightful little girl and perfect for our family. We're excited to find a community of others with PFFD to learn from and share with. I've started a blog to chronical our journey. Please feel free to visit: www.Elsiesleftleg.blogspot.com
We'd love to hear any comments or advice as we are just at the beginning of the journey. Thanks!
Quick reminder - the next CFD/PFFD, FH chat is on Dec 1 at 8 PM ET.
Contact icll (at) lifebridgehealth.org for more info; please include description of your child so that we can tell the legitimate requests from the drive-bys.
My son Damian was born July 3rd, 2011. Throughout my entire pregnancy I was examined carefully because I have a cardiac pacemaker which I received about 3 months before his conception. I had a lot of ultrasounds and all the tech's and doctors showed a normal healthy pregnancy. My water broke at 3:30am July 2 and daddy and I took off to the hospital anxious, tired, and scared, excited...every emotion. 23 hours later on July 3rd Damian was born only 2 weeks early and a surprising 5lbs 3 ounces. The doctor asked "why is he so small?" I had gained over 50 lbs so we were all shocked.
So my daughter will have her first surgery in September of 2010 and I am anxious on what to do with insurance! Is there any benefits, programs or good insurance companies anyone can reccommend? Im pretty clueless when it comes to insurance because I have never needed anything more than a perscription or two! Thanks!
Quick reminder that Dr. Standard and Dr. Herzenberg will be available on line to answer questions about PFFD (CFD) this Thursday at 8 PM Eastern (US) time.
This is a good way to get some preliminary information from the doctors and equally important, meet other families. If you have digital x-rays, the doctors can also take a look at them.
For more info, contact icll (at) lifebridgehealth.org . Please be sure to include a little background info so that we know you are "real". (Unfortunately, we get from people with less than stellar intentions).
My 11 month old was just diagnosed with bilateral PFFD today. I was doing some research and was wondering how do I find out what type she has? Also do people with PFFD have a big delay when it comes to walking? My little girl doesnt use her legs at all at the moment. Any info or advice would be awesome. Thanks!
