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Daughter's First Lengthening

Our daughter was born almost 4 years ago with congenital short femur/unilateral pffd. Although we discovered it while I was pregnant and knew she would eventually have 3-4 lengthenings, our treatment so far has been just to LOVE her and watch her grow and develop into the beautiful little sprite that she is! Her first lengthening is pretty quickly approaching now and my husband and I have not had anyone to talk to (other than the physicians). The surgeon's office had tried to reach out to other families to see if they'd be willing to speak with us and share their experience(s); however, no response. Would any of you (either patient or parent) share any advice or tips? We are 2 working parents of 3 children (in central Illinois) and the closest family are 3 hours away...we're a little scared overall and we'd just like to have some peers who might help us understand how to work through some of our thoughts and concerns and maybe offer some guidance on what to expect throughout the lengthening process. I have always put aside my fears and emotions about the lengthenings for three reasons: first, I don’t know anyone else who has gone through this; second, my husband and I are extremely confident in our surgeon and the plan of care for her; and finally, because I’ve never wanted to waste a day worrying when I know that there would come a day when we would need to face these fears and concerns head on ... but now that time is almost here and my husband and I feel a bit…alone.


My daughter is 8 and has pffd in her left leg. She has had many surgeries including 3 lengthening procedures. We live in the Philadelphia area but I would be happy to talk to you via email. My email is "beth reinert @ yahoo. com" just remove the spaces.


Beth - Thank you so much for your reply! How wonderful of you to offer your time and means so much and you've given me great relief that I'm not alone! I will email you soon.

Beth - Thank you so much for your reply! Your offering to talk/correspond with me has given me such a huge feeling of relief! I will email soon. Thank you.

Please email me or text if its easier for you!! I am at the end of my journey with lengthening and teaching out to families just starting it is really my calling at the time. I have done 20 inches of length which is just crazy!!! I would love to talk and maybe help you find people closer. My cell is 2052816685, email is ALSO there is a pffd Facebook page that is fantastic!!! Can't wait to help!!