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About 19 inches done with Paley!

I just wanted to give a little history, hopefully provide a little encouragement, and just see if anyone out there has questions during or before this process. I am now 23 years old and have been with Paley since before he was on his own when I was 8 months old. I have unilateral pffd with out a fully formed hip and knee. When I was finished growing I was going to be 22 inches from the ground. I had 6 lengthenings and took a break to finish high school and college. I had my 7th lengthening in Dec. This is my second ISKD rod and we have gotten an inch so far from it - one more to go then probably a hip replacement. I have been there, done that, with most all of this. I have had those really easy lengthenings, I have had those anything that could go wrong did go wrong lengthenings... I have been in case studies and done ones he was more practiced at doing. I think I have also felt every emotion that one can feel at one point or another. All in all I am thankful for the decision that my parents made for me at such a young age to do the route of bone lengthening. I am so so close now and it is truly amazing!!!!!! I would love to talk to, answer any questions, anything, for those that are the patient and for those parents that are trying to make what is one of the toughest decisions of your life as to what path you pick for your child. I am finally at an age that I can see both sides of the fence finally and would love to help in anyway possible or hear your story!! Thanks!
Rebeccah

You are amazing and very inspiring with your words!!! I think everyone that reads your comment will feel peace and joy to know that as an adult you would do it all over again. You are right, as parent of a 21 mo that has PFFD I sometimes feel like I'm not making the correct decision. I sometimes wonder if I will hinder my son's life with the decision of lengthening but comments like yours make me feel better. Thank you for your words of encouragement!!! God Bless

I am so glad that I can help. I would love to talk to you anytime if you have any questions or doubts - don't hesitate!!! So are you thinking of lengthening and where do yall live?