I would be frustrated still not having a definate answer, ykwim? Still its good to have the information. I can only imagine it would be really hard to just wait and see...
yeah, I have been mulling the info I received over and while I REALLY happy he is doing so well, I realised that what we know from my perspective isn't that much different than before.

However the fact that he is improving and not getting worse is the best thing from it, and the fact that steriods aren't going to happen yet.

I think I am going to have to get used to fact that we aren't going to have a definate answer for this condition, and everyone knows more now than at first, we will just have to wait and see how it develops. I just hope that the best case scenerio is true and he grows out of it within a few years!! wouldn't that be wonderful!