What a year! Our life has been completely turned upside down by this disease this year, and I’m not sure we’ll even understand how much things have changed until we can look back on it. We began the year with … Continue reading
These past few months we’ve found that it’s really too easy to lose sight of the reality of this disease when things are going well. I suspect it’s due in part to how hard things have been when Zoe had … Continue reading
It’s been an incredibly long year. We’ve largely set aside our lives as we turned our focus to seeing our newborn through a terrible, rare and unforeseeable disease and all of it’s consequences. When we began this journey, I honestly … Continue reading
Today’s clinic visit brought interesting news, there was talk for the first time about a release date. Release at this point means being allowed to return home and switching our long term care to Wake Forest University Hospital (Brenner). They … Continue reading