Today we went to see the specialist that the specialist sent us to see. Short visit. Lot of tears during the x-rays. Doctor comes back in and says, “She doesn’t have a dislocated patella. She has a dislocated knee. I can’t help you. Go see this guy (in Seattle) or this guy (in Florida).” What? Scrambling, trying to keep him in the room long enough to process that and form a reasonable question. Evidently, knees do get dislocated to the front or the back. Usually in some trauma. Congenital and chronic is very rare. And hers is dislocated to the side. He had never seen it – and based on his age – that’s saying something. Down syndrome complicates things with our extremely lax ligaments. Grasping for straws I asked about her practicing her standing and her cruising – is she hurting herself? No, not right now. But if you don’t fix this, she will. Ahh…brain starts making connections. <flashback> Specialist that referred us here told me that she would need a total knee replacement and a year of intense rehab, but “no one will do that to her.” Be prepared, he told me, that this doc is not going to be aggressive with her. <back to reality> So if he thinks we need to be aggressive, then this is bad. Worse than expected. OK. So now we have to figure this out.
Have to contact the doctor in Seattle (of course the one WITHOUT email – at least that I can find (and the one specialist highly recommends. He’s worked with him in the past about orthopedic issues with DS kids). Have to contact the doctor in Florida. Need to send them the x-rays and clinical notes and try to get as much information over the phone before we think about jumping on a plane. Will private insurance cover this? Will it help? Will it be worth doing? Watching her scream during x-rays makes me just want to accept that she’ll never walk and move on. But if we don’t do something, will we hurt her more? How long would we be gone? What about the rest of the family?