So our first visit at the N.I.H. is finished. There was so much discussed and I leaned about so many different things, it’s going to take a few days to absorb everything.
Overall, I definitely feel like our case is in good hands and thankfully the future looks bright for NEMO research.
In the meantime, it’s basically back to the same protocol. Antibiotics, IVIG, and sticking with doctors who know our case, so they feel comfortable stepping out of the box when necessary!