Preparing for the National Institutes of Health Visit

I can’t believe that it has been 8 months since we last visited the NIH!  Time definitely flies by.

I’m not expecting any real surprises, but honestly, that is what I am anxious about.  Hannah is known to surprise us and throw things into the mix, so I don’t want any surprises.  I know that she is doing another EEG, BAER study, meeting with PT/OT, having another abdominal ultrasound and/or CT scan, and a couple other things.  Nothing as drastic as having to be sedated for an MRI or having to deal with an IV this time, thank goodness!

I’m looking forward to seeing Dr. Sidransky, Dr. Goker-Alpan, and Catherine, their coordinator.   They are such wonderful, down-to-earth, and caring specialists.  We really felt like they were taking a personal interest in Hannah, spent quality time with our family, that she was just not another number.

What do I hope to leave this visit with?  Good news.   But honestly, I just want to know exactly how Hannah is doing in relation to this disease.  They are the ones who can tell us this more than anyone (even continuing our “no prognosis at this point” is good news!)