Faced with many hard decisions

Now that I finally had a diagnosis for Kayla's birth defect I wondered where to go from there. I called the Shriner's hospital for Children in Lexington Kentucky and made an appointment for Kayla to see an orthopedic surgeon. I also contacted a family friend who was also an occupational therapist at our local hospital and I told her about Kayla and she told me to bring Kayla to see her. I took Kayla to the Therapy office to see her and she decided that she wanted Kayla as a patient so we began trying to get a referral from her pediatrician for her to have therapy. In the meantime I did more research and I found out the treatment options for Fibular Hemimelia and I was not happy at all. The most popular treatment option was Amputation. There was NO WAY I was going to allow a Doctor to amputate my daughters leg. The second treatment option was limb lengthening surgery. Not wanting to even think about amputation I chose to do more research on the Limb Lengthening. Upon doing my research I found out that limb lengthening was a long and hard process but My husband and I weighed the pro's and con's of it all and decided we would rather have the limb lengthening done and give Kayla a chance of keeping her leg than we would to let them Amputate. The day that we went to the Shriner's hospital we went knowing that we were going to discuss limb lengthening with the Dr. and wasn't even going to discuss amputation because it would be a waste of time since we had already decided we would not even consider amputation at that point. We got Kayla registered at the front desk of the Shriner's hospital and then they called her back for x-rays. After the x-rays they put us in a room to wait on the Dr. The Dr. came in and introduced herself and began discussing Kayla's defect with us and right away she began talking about amputation. I told her that we didn't even want to discuss amputation because we had decided on the limb lengthening surgeries, but she didn't seem to understand that because she kept talking about amputation as if she were trying to get us to change our minds about the limb lengthening surgeries. Every time my husband or I would ask her about limb lengthening she was very reluctant on answering us and when she would answer us she would say something bad about limb lengthening and then would go right back to talking about amputation saying only good things about amputation. We were not against amputation because we knew that amputation was the only option that some children have but we knew it just wasn't the right decision for our family. By the time we left there we were very uncomfortable with the Dr. and were very discouraged. After some discussion we decided we would seek out a second opinion and that is when I remembered that while doing my research for a diagnosis I found the Rubin Institute for Advanced orthopedics in Baltimore Maryland and Dr. Dror Paley in West Palm Beach Florida, who use to work in Baltimore Maryland at the Rubin Institute before moving to Florida. After finding Dr. Paley I emailed him and discussed Kayla's condition with him but after finding out that Kayla's insurance may not cover her for a visit in Florida and since Dr. Paley was so far away from us, he recommended that I get in touch with a former colleague of his which was Dr. John Herzenberg from the Rubin Institute in Maryland and he forwarded Dr. Herzenberg my email. It wasn't long after Dr. Paley forwarded my email that Dr. Herzenberg responded to the email and encouraged me to bring Kayla to Maryland for a consultation at the Rubin Institute. After much discussion my husband and I decided to make an appointment with Dr. Herzenberg for our second opinion. The appointment was set for July 1, 2010 when Kayla was only 4 months old. While waiting on time for her appointment in Maryland we got her approved to do physical therapy with our local PT office and she began therapy.