My son was born April 23, 2009, he was born with pffd on his left leg and on his right leg he’s missing his fibular bone. He also only has four toes on each foot. I had 5 ultra sounds during my pregnancy and nothing showed anything wrong with his legs. When he was born it was very hard to deal with but he was loved very much. I could not stop crying and I remember while holding him he gave me a smile as if to say everything was going to be ok.
Although it has been hard, first finding a doctor, the first one didn't even know what Tristan had; he said he had to look it up. We did not go back. We finally found a hospital that only deals with limb differences and are finally getting answers to all our questions. Today Tristan is a very happy baby! He was crawling at four months (commando style) and now that he's 51/2 months we had to Tristan proof the house.
We plan on surgery in March to amputate part of his right foot. Because he's missing his fibula he has no outside ankle bone so his foot is very unstable.
I also want to say I just found out about this web sight through Mary Free Bed and a book they gave me Imagine...Amazing Me! By Libbi Chilia. It showed me that we are not alone. Thank you for an amazing book, Every time I look at it I can't get over how the kids look happy. I know that there’s going to be more hard times ahead but for right now I look in those big blue eyes and thank God every day we have Tristan.
Frances
10/12/09
Comments
surjury ?
Tristan is going to have surjury in March to amputate his right foot because he's missing his fibula bone, there's no bone there to stablize his foot. Ive been reading alot of stories with other families that have gone through this but all the stories I've read don't tell how long the recovery process is, or what you went through at the hospital? If anyone out there has any advice please wright to me at f.barnes09@yahoo.com, We have a really good support team at Mary Free Bed with Dr.Maples and Dr.Forness but I would love to here from parents.
Thank You Frances
Hi there, I would go see Dr.
Hi there,
I would go see Dr. Paley in West Palm Beach. He performs miracles!
Maria Davidson
Go see doctor Paley!
Hello!! My doctor wanted to cut off my foot and fit me with a new prostetic every year until I stopped growing. I would have a deformed hip and be disabled my whole life! I saw Paley when I was 8 years old, now 24 and I have gained 9 1/2 inches in length and I can run and play sports and I am no longer limited. I have one more surgery to go to remove hardware and I am done!! The recovery is very long!! but it is worth every minute to know that you did all you could to help your son live a normal life. Your son will have more issues as he gets older and Paley will correct all of them for you. Go see PALEY!!
foot amputation
I had my foot amputated at age 19 and had no problems. I am now 43yrs old. It was the best decision for me. I was up and walking in no time. Children adapt and recover so quickly.
Frances,My son had a symes
Frances,
My son had a symes amputation on his left foot in 2008. He also had fibular hemimelia and unstable ankle bones. Two years later he is doing EVERYTHING with his prosthetic. If you are comfortable with your decision to amputate, please don't second-guess yourself a million times. I did, but ultimately it was the best decision for us. We did not just "cut off his foot" and we did not "prevent him from having a normal life." These are the types of insensitive comments that make people who chose (anything but lengthening) amputation uncomfortable. My son has a very normal life and does great!
We had his surgery at Shriners in the Twin Cities. Everyone there is great and the surgery went very well! He was supposed to have a day of pre-op. But due to weather and some other issues, we ended up going up really early on a Monday morning. Having pre-op at like 6:30am and then had surgery at 8:30am. Surgery took a couple hours. We actually only had to stay overnight one more night and then went home the next day with a soft, wrapped cast. The night in the hosptial was horrible and he did not sleep well and was in some pain. He was in pain yet for a couple days, but was already pulling himelf up by the 3rd day. He got fitted for a prosthesis at his 2 week check-up and got his first prosthetic leg 2 weeks after that. He started walking by himself about 3 months after the surgery (age 16 months)with his prosthetic and nothing has slowed him down since.
I hope this helps. Feel free to contact me if you have any more questions about amputation - which is a very realistic option for some children and families!
Tristan walking!!!!
Eric was getting ready to go hunting for the weekend (Eric is Tristans' dad), and he left his bow case on the floor. Tristan crawled over to it and pulled himself up to a standing position, we were both in shock he just looked at us and smiled. A couple of days later we had a shoe box on the floor and he stood up on it and took a couple of steps.He pushes the box across the floor. Now we can't stop him from standing up on his toys and walking ,he's had a few falls but he wants to walk all the time. His right foot is not stable so i'm a little concerned if it hurts when he puts weight on it, but he does not seem to be in pain. Did any of you with kids with PFFD have this situation? I just don't want him to hurt his foot should I buy shoes to kinda stabilize his foot or just let him go? He just turned 6 months on the 23rd of October.