We're back from our whirlwind trip and can call it a measured success. The girls did great on the drive, but 7 hours doesn't feel that much shorter than the 8 it took to get to Kansas 2 weekends ago. We had lovely accommodations and the girls did well with all the schedule changes. The appointment with Dr. B was helpful for some things and not so helpful for others. In retrospect, my expectations were a little high and overall, one of the main messages we took away was very positive: We're managing her care really well and despite not being seen by a "Turner Syndrome Specialist" we've managed to triage most of the major complications that girls with TS experience. We didn't learn anything that dramatically changes what we're already doing, but we are reassured that she's received top notch care from the beginning of her life. We also confirmed that a number of her other medical challenges are not directly related to TS, but that a few of her issues may be exacerbated by TS. So, we have a bit more to think about.
Most helpful, he was able to give us some input regarding growth hormone therapy and some direction for pursuing auditory processing and developmental assessments. We could return to Cincinnati in a few years for a developmental assessment with a Developmental Pediatrician who works with all their Turner Syndrome patients, so we'll keep that on the table, but for now, there's no reason for us to return soon and we feel good about that. (Please don't make me take a road trip for a few more months!) :) Fortunately, we can handle by phone any future questions that come up.
So thanks for your prayers, we are glad that we went and are thankful to know we're doing our very best to give Elizabeth the optimal care.