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tom now

a photo of the cheeky one! in his sister tent!

Tom is at school!!!

Just a quickie update, and a happy new year to you all!

Tom is now nearly five and is settled at school, (it took a long while!!!), and he is enjoying it very much,, he is THE most popular child in the whole school, of which im totally blown away, i was dreading school and bullying etc(i think most of us do!)
He is even doing PE and climbing on PE aparatus and dancing,but he doesnt like this very much as he says he looks stupid all the boys do!!
He keeps his extension on, and he knows his limits, there arnt many though, he tries it and if he cant he will try again before he resigns to it.

New born with Bilateral Hememila

Hi Everyone.
We are parents of a new born who was born with bilateral hememelia. 3 digits on right foot, and 2 on left. The right foot has a heel bone, the left does not at this point.
We are going to BC Childrens hospital in a few weeks to speak with a specialist about long term forcasts, possible amputations etc etc...
Knees and hips are normal.
There isn't alot of information or support out there, so please, if you can help out, any information would be greatly appreaciated. Send your email and I will respond.
thanks Gino/Katherine

Arizona doctors, pffd and congenital hip deformity

Hello

I was curious if anyone knew of any doctors in Arizona that perform the super hip surgery or limb lengthening surgeries? My son Chase will need the super hip surgery this May, and we are hoping Dr. Paley will be performing the surgery. We have been seeing Dr. Paley since my son was six months old, and he will be turning two years old this March. Our insurance company is giving us problems covering the costs of his surgeries since it is out of state, and is determined to find a doctor in AZ to perform the surgeries. We do not feel comfortable sending him to just any doctor. From what I hear, Dr. Paley is the best!!

Question about car seats with Spica cast

Hi everyone. My name is Jen and my son, Luke, has PFFD class 1b(Dr. Paley classification) in his left leg. He is 17 months right now and although this is my first time actually writing on this wonderful site, I have to say THANK YOU to all who have shared their stories b/c it has helped me out tremendously!!! I absolutely crushed when he was born and we found out about his leg. I cried for 2 weeks straight and then I realized that this was not the end of the world. I have been reading entries from this site for the past year and all of these children are such inspirations!!! Luke will have an estimated 28cm.

Ryan's photos

Hi my name is Michelle. Im from Dublin Ireland. My son Ryan has PFFD in his right leg and he is four. i have read alot of your stories and how some of you have alot of trouble finding trousers for your children. The prosthesis Ryan has his foot doesn't point outward it points down and i find its alot better for his balance and i dont have to worry about finding the right clothes for him. I really hope this information is useful.

three pffd babies meet

My three and a half month old son waylon had an appointment at Shriners in Sacramento today. I met Kalyn's mom Heather on this web site who also goes to Shriners in Sacramento, so we decided to meet there today. We introduced Kalyn and Waylon and we were introduced to a little girl named Galilia who is 19 months, has pffd and is walking with the aid of a prosthesis. It was so comforting to see other moms and babies with similar issues. We were able to sit and share with each other our stories so far. I am so grateful for this web site. We joked that Kalyn and Waylon would be boyfriend an

Forgot

I forgot to attach pictures of how I look nowdays.

Steph

Bilateral PFFD

I am a 38 year old woman with bilateral pffd. Both are Aitken class D
My legs have about the same length.
When I was four my parents decided that I had to have rotation surgery on both legs so that I could wear prosthesis. After the operation my legs and feet stopped growing and my shoe size is still a 12, 5 childs zize.

Unfortunally I did never succeed in using the prosthesis becaue I have no hip loints.so I decided to walk on my natural feet. I have a very waddling gait but that is not a problem for me.
I can walk short distances in and around the house without support. Outside I walk with two short crutches or use a wheelchair.

Shoe Lift

Hello. My daughter just turned 1 two weeks ago and she also got her shoe lift and AFO brace. The lift is about 7 cm. Since she was about 8 months old she has been pulling herself up to standing and using the furniture to "cruise." Well, whenever I put her shoes on she does not want to stand up -- she prefers sitting. WHen she does stand, she still tries to bend the knee of her left leg (her longer leg), which she normally does without the shoe on. Well, this frustrates her as now her legs are even with the lift and she is not used to that. Has anyone experienced this and how do you overcome it? I want her to get used to the shoe but it seems like she only stands and attempts to walk without the shoe. Any thoughts or ideas?

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