Hi, my name is Shawna. My son Jake is 2 months old (born on May 28th, 2008). He was born with unilateral PFFD of his right femur. My husband and I learned of his diagnosis back in January 2008 when I was @ 20 weeks pregnant. We went through a whole slew of emotions and had so many questions, but most of all we just wanted to meet our little man. Well, he is here and he is wonderful!
We've been to a pediatric orthopedist specialist who took x rays but said there is nothing he could do right now and to come back when Jake is 6 months old (November, 2008). We are also going to Baltimore, MD for an appointment with Dr. Paley and associates sometime in early 2009 (when Jake is about 10-12 months) for an evaluation. We’ll probably see Dr. Hertzenberg, he is a colleague of Dr. Paley. We are hopeful that leg lengthening will be the course of treatment for Jake’s leg. We also have to see how his hip grows and if it needs surgery prior to any lengthenings.
I am very happy to have found this site and see that there are some other members who we have a lot in common with. I would love to keep in touch with anyone who wants to talk about treatments, therapy, Dr. appointment’s… etc.
Right now we are just remaining optimistic and enjoying our precious gift from God. He is currently going to physical therapy and we will know more about his course of treatment as he grows.
Shawna
Comments
welcome
Welcome to the site. I'm sure he's adorable. You're obviously very well-informed and very pro-active, which is a great combination. Good luck and I hope to hear more!
WOW, what a cute little guy
WOW, what a cute little guy Jake is. Welcome to this site. I only found this site a few days ago, thanks to the article in People magazine.
I was born in May also, the 18th. Speaking as an old guy of 60, I know Jake is going to have it a little easier growing up now with the new medical procedures, and also with the ADA law in effect. The US is a lot more accommodating to people with disabilities than it was 60 years ago.
Keep us informed of his progress.
Later, Duane518
Similar Situation
Hi Shawna -
Your situation sounds exactly like ours! Our son was born on May 18th 2008 with PFFD in his right leg. We also found out in the ultrasound around 20 weeks and went through a couple more ultrasounds after that. Your little guy is adorable! We will be going in October to see Dr. Paley and then to the Shriners as well. I would be interested to hear what type of therapy you are doing with Jake. We have someone that comes to work with Samuel once a month and they show us different exercises to do. Right now, we are not really sure what type of treatment will be best so we are waiting to see what the doctors say. Hopefully we can keep in touch and compare notes. Where do you and your family live? We are in Stevens Point, WI. If you want to keep in touch, my email is deb_zurawski@yahoo.com (I am logged in under my husbands account). Take care! - Debi
Dr. Paley/Dr. Hertzenberg
Hi Shawna,
I just stumbled across this post as I was looking for info on Dr. Hertzenberg. I need to schedule a (hopefully the last) surgery with him now that Dr. Paley is moving to Florida. Our daughter is 18 years old with PFFD in the right femur mostly. She also had her hip reconstructed, her knee reconstructed , 3 lengthenings and other misc. surgeries.) She has been seeing Dr. Paley since she was one year old. Right now after a dozen different surgeries her legs are both the same length so I wanted to encourage you that one day (assuming the doctor tells you that your son's situation is treatable) your child will walk on both legs without a prosthetic device. It has been a long hard road but it is worth it see her walk. Feel free to e-mail me with any questions you have about the process. (That includes anyone else reading this post.) We've seen it all.
dbdouglas@aii.edu
Donovan Douglas