Slight Update on Bryce

We had a neurology appointment today with Dr. Sweetman. I love meeting with her. Her office has toys all over it, she talks to me like a person, and shows respect to Bryce. She tells me what they are finding even though they don't have all the answers and what they are finding is not always what I want to hear. At least she is not telling me that everything looks fine when it doesn't . She (and others in the team) have been reviewing the MRI's and with the full results of the last MRI (which she finally received from PCH) they have found that it is a type of white matter depleting disorder. He is actually losing or has lost some of the white matter in his brain. Not good news, but at least we know what they are finding. The part that gets me is that they are seeing this in the MRI's that have already been done and that we were told originally that they looked fine. I realize that we are working with new neurologists and this is why we decided to get other opinions. To see what they could see. I'm so glad that we have gone this route! I am also really glad that they are looking into what has already been done instead of continuing to poke and prod poor Bryce for a shot in the dark diagnosis. He has to go through enough of that just to take care of the symptoms and issues he is experiencing due to this disorder.