Our son Jacob has PFFD Type B. He has had 3 superhip surgeries over the last five years, peformed by Dr. Paley at the Rubin Institute for Limb Lengthening in Baltimore Maryland to stabilize his hip. Jacob recently had his first lengthening surgery performed by Dr. Paley on June 15th 2007. Jacob is now recovering well and he is having physical therapy at the Rubin Institute's therapy department. Jacob was born with a hip that was not fully formed and a very short femur. Dr. Paley was the only doctor that would and could help our son to correct his hip first.
My 3 and a half year old son Romie is going in at 7am (June 27th) in the morning for his super hip surgery at Shriners with Dr McCarthy in Philadelphia and I am so so so nervous and worried about everything. I would really like someone to share their experience of what the after effects are like and give us the heads up on what to be prepared for. Please help.
I would like to let everyone know of a Limb Difference Picnic (any limb) that
will be held in the Seattle area on Sunday July 22nd at 2:00 pm. It
will be at Shelter #2 Lower Woodland Park (just below the zoo). Address
is 1000 N. 50th St., Seattle, WA 98103. It is a bring your own
dinner/lunch thing. Balls and bubbles will be provided.
If you have any questions, just let me know and I will get the answer
for you. I am not personally going, due to many children and that I
live in Southern California, but I believe it will be a great time for
Well, we've made it to Baltimore for Ethan's superhip II surgery. He is in with Dr. Paley now and we hope to have more news by this afternoon (unless they keep updating us like they've already done once today). So far all is well.
If anyone has anything to share that may be of help for dealing with a cranky 3 year old after surgery I'd love to hear it! Also, any other info. anyone wants to share on recovery is appreciated.
My son, Brayden, was born on June 20, 2006. When he was born we had alot of problems with him. He scream and cried all the time. We didn't know what was wrong with him. We seen several doctor's. It wasn't until January 2007 that the one doctor we say requested a MRI on him. We then found out the reason behind his crying, etc. He was diagnosed with a mild case of Cerebral Palsy and we were also informed he had PFFD in his left leg and arm. More so in his leg. From there we have been though a year or more doctor's and therapy. He is enrolled in Physical and occupational therapy.
About a year ago I finished a children's book for children with PFFD and other limb and extremity differences. I have been to publisher after publisher....and more! It has been rejected over and over. Why? Because it's soooo different. There is nothing out there, and it's risky to take a chance on an "unknown" author. However, I have clinics, doctors, PT's, OT's, teachers and parents rooting for me. There is value in the book...I know it...anyone who has seen it knows that!! So...to all those waiting for the book...and all the adorable children IN the book...
I just wanted everyone to know that there is a new book out there entitled "Poster Child". It was written by a woman who had unilateral PFFD and was the poster child for the March of Dimes in the 70s. She went to Harvard and was a Fulbright scholar - and is obviously a VERY high achiever!
It is very interesting ... though I have to remind myself that a lot has changed since she was undergoing treatment.
Hi everyone, just thought id share this with you, Tom has just turned five and is in his first year of school, he has been enjoying p.e but just could not climb over the top of these aparatas, couldnt get his leg over the top!
His teacher called me into school and gave me this photo, aparently after a whole term he had managed it!! even made Mrs Mee cry with happyness!
now he can do it everytime, he never gives up at anything, he evem has his first sports day tomorrow!!!
anyway love and hugs as always enjoy the photo of my superman
love Sally
xxx
