Our little sunshine ☀️
Our little world is changing quite a bit and we’ve had to make some pretty big decisions. Seattle Children’s We really had a wonderful visit. We met with the neurologist and rheumatologist for over two hours, where they were able to meet Ellie, evaluate her and fall in love with her. While we were hoping for an aha moment, they are just as baffled as the rest of us. They did reiterate that the steps that have been taken thus far by our Boise team were exactly where they would have started, which was reassuring to hear. They will be collaborating with our Boise team going forward and have a path that we’re moving forward with, starting with a repeat MRI, lumbar puncture and more labs. They are still thinking it’s some rare disorder (metabolic or autoimmune) caused by a genetic condition. Following our visit, our Seattle team discussed Ellie’s case with bio chem genetics and they have scheduled a visit in July. While that’s a bit further out than we’d like, initially we were t...