Emmaly May In Fairbanks, Alaska

When I was 5 months pregnant, we went in for the standard ultrasound to check for facial deformities, presence of organs, and measuring of the femur to check the actual age of our baby. At that appointment, we found out we were having a girl, and the technicians said everything looked fine. At my next appointment with my OB doctor, he told me that it looked as if her right femur was a little shorter than the left one or maybe bent. He ordered another ultrasound, and after that, he told us we could go down to Anchorage to have the closest specialists take a look with better equipment. We decided to forego the expense of travelling from Fairbanks, staying in an over-priced hotel, and having MORE doctor bills only to have the perinatologist tell us there wasn't anything we could do about it until after she was born anyway.
After a rough pregnancy, and a difficult labor ending in an emergency C-section, Emmaly was born October 26, 2007. The pediatricians who examined her during our stay in the hospital all commented on how her right leg seemed to be shorter than her left, and that we should probably have it checked. It didn't seem like that big of a difference to me, and since my own right leg is measurably shorter than my left, my mother's is too and it hasn't caused either of us any major problems, I figured it probably wouldn't be a major problem for Emmaly.
When she was two months old, it became apparent to me that there was a significant difference in the lengths of her femurs. I asked our pediatrician about it, he measured her legs and came up with a 2cm difference. He sent us to an orthopaedic surgeon who was very nice, and straight forward with me--he'd never seen it before. He ordered some x-rays and left us in the examination room for a while so he could look it up. He came back and told me that I could Google search PFFD and read what was there and I'd be more of an expert on the subject than he was! It was done in a lovingly humorous way, so I wasn't mad at him, only discouraged that I was no wiser about what to expect for my daughter. He brought in the x-rays and told me the little he learned about PFFD. He told me she had the mildest form of it since all her other bones seemed to be normal, and that hopefully, her femurs would grow at a proportional rate. If that was the case, she would need special shoes while growing, but wouldn't need surgeries until she was a teenager. He told us to come back when she was 6 months old so we could get more x-rays, and have a better idea of how she was growing, but that was all he could do for us.
After some internet research of my own, and crying over the x-rays and documentation that I didn't fully understand, I was relieved that Emmaly did in fact seem to have the mildest form of PFFD. I'm guessing at the definition of "unilateral" to mean that only one side, or one section of one side of the leg is involved, both of which are the case with Emmaly.
The Orthopaedic doctor called me back a week later, and said he had conferred with a colleague in Tacoma, WA that specializes in Pediatric Orthopaedics, and he said that I would have to go to someone who had more experience since he had only come across a handful of them in his career, and had sent them all elsewhere for treatment. Our doctor in Fairbanks said he would refer us wherever we wanted to go. I cried some more after getting off the phone with him. Living in Fairbanks makes travel extremely expensive. If I can't afford a trip to Anchorage, how can I afford a trip to New York or even Seattle?!
Yesterday, we went back to the Orthopaedic Surgeon. He took another x-ray of her hips and femur, and gave us some encouraging and some discouraging news. He said that it looked as if her hip ball was forming on the right as well as the left. The discouraging news is that it isn't growing at the same rate as her other leg, so surgery to lenghten the bone will be necessary.
More than just the worry over her physical development, I am scared for my daughter's emotional and social developement. I don't know how to help her understand that her leg doesn't make her any less special or important than any other person, and that she can still do anything she sets her mind to. I wish I had taken an anatomy class in college that could help me better understand the information about PFFD. With so many other things out there to worry about, I wonder how I will help her cope with this. And from everything I've read, no one knows what causes PFFD, so how do I explain to her WHY this happened or HOW this happened to her?
I continue to pray for my daughter, for myself, and for all those who she will come into contact with in her life. I pray for us all to have love, compassion, patience, and understanding.