Fixable is not so easy

We did so much research on PFFD that I was just getting tired of looking at it! I read so much, there were so many decisions we had to make. Probably the easies thing to do with her leg was amputation, then there was turning her foot around and wearing a prosthetic so her foot would act like her knee, then the hardest was lengthening her leg but this would allow her to one day have both legs the same length. I knew it would be hard on her but lengthening was the way I wanted to go. I sure didn’t have all the information on lengthening a bone but in my mind it was something easy to do. Well lets just say I was wrong! All the research I was doing I kept seeing the name Dr. Paley come up, well then I started researching him and come to find out he is one of the best in the world at lengthening bone and he specializes in treating children with PFFD, event better news he was right here in Florida. So with no hesitations I called and made Kaylee an appointment. 2 months later we headed to West Palm Beach, FL to meet with Dr. Paley. That was such a turning point in my life sitting in that doctors office, it all came into prospective for me. There were kids all around us with the same and event worse conditions as Kaylee I finally understood this whole PFFD thing. It’s not something to be taking lightly for sure, there is some much involved this was very overwhelming to me. I finally seen Kaylee’s future and it was hard to coup with. They called us back to get x-rays of her leg, still till this day I cry every time they do this she hates it and I am always so scared of what all these x-rays are doing to her, my biggest fear is what if one day she can’t have children of her own b/c of all these x-rays. You never know, but I just have to put my trust in these doctors I just hope they know what is best. After a few hours of waiting for the doctor they finally called us back, he said she would need at least 3 lengthening when she is 4 years old, then 6 years old, then 12 years old and she would also need the super hip and knee surgery when she turns 2 years old. I was thinking “Ok this is easy right?” No, not easy at all here are the details, when she is 2 they will give her a hip and a knee then she will need to stay in a lower body cast for 6 weeks, along time for a 2 year old! Then the lengthening comes, they are pretty bad, she will have this thing called a fixatetor on her leg for 8 months at a time which 4 of these months we have to stay in West Palm Beach. A fixatetor is a thing that has all these pins going into her leg and everyday you have to adjusted them so that the bone in her leg will stretch. Very painful for her, lots of physical therapy, and it seems almost like she can’t move for 8 months. As you can tell I am not thrilled about this but in my mind this is the only way, and although this is going to be so hard on her and all of us, it has to be done! I just have to thank the Lord that Kaylee is being seen by the best, we are so thankful that this is event an options for her and I always say I am so thankful that we are just trying to save her leg and not her life! Thank you Lord for all of our blessings!