Light at the end of the tunnel

It was finally time for Kayla's appointment to see Dr. Herzenberg at the Rubin Institute in Maryland and we were packed up and on our way. It was only supposed to be about a 9 hour trip, but with having to stop so much to feed Kayla, change diapers, eat and take bathroom brakes it took us around 11 hours or a little more to get to Baltimore. We drove straight through thinking we could handle the trip but it was harder on us then we thought. When we made it into Baltimore we went to the hotel we had made reservations at and got settled in for the night. The next morning we got up and got ready for the appointment. The hospital was only about 4 minutes away from the hotel so we got to the Rubin Institute just a little earlier than our appointment because check out time at the hotel was early. After a long wait we finally got called back to see the Dr. He was very nice and really took the time to answer our questions and discuss all of our treatment options with us. If I remember correctly they didn't do any new x-rays because she had gotten x-rays done at the hospital when she was born and at Shriner's when we went there in April for her appointment and they didn't want to expose her to any unnecessary radiation. Dr. Herzenberg told us Kayla's predicted leg length discrepancy, which was between 6 to 9 inches at maturity without surgery if I am not mistaken. He also said that if we didn't have the surgery done that by the time she was grown her LLD would be so significant that she would not be able to have a shoe lift that would be tall enough to compensate for the LLD and he told us about other conditions she could develop over time if she did not have any surgery done such as scoliosis of the spine. He was very willing to discuss limb lengthening with us and explained everything that would be done in detail, and also said that with the surgery we would have to stay in Maryland for around 3 months during the lengthening procedure and for physical therapy. He also spoke about reconstruction of her ankle and also discussed either doing 3 lengthening's or 2 lengthening's and stunting the growth in the other leg. He did discuss amputation with us but did not try to convince us it was the best option the way we feel that the Dr. at Shriner's did and he also told us he would not do any surgery until Kayla was between 18 and 24 months of age and at the time she was only 4 months old so that gave us a lot of time think things through. We left there feeling very reassured that limb lengthening was the best option and had made up our mind to go with limb lengthening and were also sure that we wanted the Dr's in Maryland to take care of our baby girl. After we made it home and got settled in, we began trying to make plans for Kayla's first surgery. I joined web chats that the Dr's in Maryland had and asked as many questions that I could to learn more and be prepared. I also joined groups on facebook and forums, and they were a big help also. After a little while we found out that Kayla's insurance was not accepted in Maryland and became very discouraged, but I was not going to give up just yet because with all the research I was doing on the Rubin Institute for Advanced Orthopedics I found out that they also had financial assistance programs for low income families that would pay some or all medical bills. I decided to ask about their financial assistance program but at the time I could never get the person I talked to about it to give me any information, she just kept saying that she was going to try to contact Kentucky Medicaid and see if she could work something out with them but in the same conversation would also say she didn't think Kentucky Medicaid would work with her. After feeling like I was not getting any answers about financial assistance and her medical insurance I became even more discouraged then I was when I found out her insurance was not accepted in Maryland. I felt like I was being pushed aside when I would ask about the financial assistance. I knew that there was no way we could go into this surgery without having answers about how we were going to be able to do it financially. There was NO WAY we could pay for this surgery to be done so if Medicaid wouldn't come to an agreement with Rubin Institute and Sinai hospital, or we couldn't get information on the financial assistance program then I felt like there was just no way Kayla could have her surgery there so I reluctantly sought out another Dr. closer to home that did accept her insurance and had experience with limb lengthening and the super ankle procedure.