August 3, 2026
The girls made it to a Benson Boone concert this last week. Planned since this winter, it’s always a huge win to make it to something waited on with so much anticipation.
Keira continues to have major issues with her GI system. This weeks agenda is trying to expedite her October GI appointment.
Tate is day by day. She’s about finished with the 20 days of antibiotics for C Diff. Still feeling crummy. But line still looks good. She’s having lots more neuro blips where she just falls asleep…sometimes mid sentence. She’s also having some trouble with swallowing. She’s seen some new ulcers again and lots of nausea and pain. There’s a care conference this week as her team works to optimize her care. Grateful to still have providers thinking about her. We’re on the other end of things with Keira and it’s beyond isolating. It’s IVIG week again Wed, Thur, Friday. One day at a time. Grateful for a sunrise each day. One day closer to that eternally perfect day.