As an update...
We met with Dr. Moskow today. He was so great! He was compassionate yet competent and was humble enough to admit that he is not able to do the surgery on her hands. We told him about Dr. Neil Jones (UCLA), who we've heard fantastic things about, and he suggested that we try him next. He's concerned that we are going to have a hard time finding someone able to do it. Our case manager (insurance) told us today that we can try Dr. Jones and if he can't do it then we can try the next option (????). They even said that if there are no doctors available within driving distance that insurance would, as a totally last resort, pay for us to travel - Praise God.
It was a pretty stressful morning but I came out of it feeling so much better than before. We finally got to see x-rays (we've been asking for them for a while) and now know what bones are there (or not there). I also came out of it really able to give this decision up to the Lord who already knows the end result. It's easy to start putting my trust in doctors rather than the Great Physician who can do so much more. I started to feel like Jordan's fate was in Dr. Moskow's hands this morning but came away seeing our visit with him as a blessing and a reminder that God is in control and that there are doctors out there who care for us as people and are seeing this as SUCH an important decision for Jordan. Dr. Moskow reminded us that her hands are never going to function or look "normal." We realize that but are working hard to give her the best results possible.
Please pray that Dr. Jones will look at Jordan's reports and x-rays and will know whether or not he is the best one for this surgery. If not, our personal second choice would be to see someone at (or someone who has been trained at) the Hand Center in Louisvill, Kentucky. The first hand transplant was done there but I'm not sure if anyone works on babies or who that would be. Please pray that we will feel confident with whomever God has chosen for little Jordan and that the right surgeon will do this for her at the right time and also that we will be able to pay for it and manage all the details (travelling, juggling commitments at home and work etc.).
Our new pediatrician's office has been a GIANT blessing too. I'll give a little plug for all of you Mommies reading this. It's TLC Pediatrics in San Juan Capistrano - we see Dr. John Carruth. They have a totally efficient front office staff, a great referral coordinator and their nurses know our names and return calls within a few hours.
Anyway - I will be posting some clear pictures of her hands soon.
Thanks for reading the lengthy posts.