Apparently I totally forgot to post how the appt on fri went so here goes - I saw my Orthopedic dr and he told me that he just doesnt have the experience to do hip reconstruction and doesnt feel he could guarantee a good outcome with this surgery for me. (how awesome is a surgeon who is honest!) - He did comment how he loves doing surgery but this surgery is just very complex and most cases of reconstruction are done under arthroscopic approach but since that isnt an option for my case he feels out of his league so to speak with this. Instead he said because there are underlying complicating factors he would like to help me find an orthopedic dr who does reconstructive hip surgery - open approach he talked about in chicago but I told him I had been talking with the dr at UofMn who has a lot of experience with this atleast with MPS with MPS I kids. So I he asked for the UofMn ortho's name and I am in the process of figuring out if I will go see the dr in Mn or see one of his adult colleagues or see another reconstruction dr elsewhere. The recovery is alot longer and more indepth with the open approach and I dont know that other drs would reccomend it but I will be talking to drs at the very least who have experience.

Had a very good weekend - have a good night - will update after the Nsg appt if not sooner on thurs.

Erica