I wanted to leave a sincere thank you to everyone who posted in this thread to leave advice or words of support. There were so many useful pieces of information left here and I have learned about some things I either did not know or had forgotten. Thank you!!
As an aside, we have seen a new neurologist who seems fantastic, and we have gotten a referral to Johns Hopkins in Baltimore, so things are looking up! Armed with everything that has been shared here, I feel more confident about having what we need to have in our files to make things a bit easier.
You are all fabulous!! Thanks again!
