February 28, 2025
Day 29
It’s rare disease day! I can’t count how many times during this admission, I’ve heard, “Tate is N of 1” with her unique combination of rare diseases. Another reason to be even more grateful to be able to access care with a team that knows her so well. Today brought some emotion with vulnerable conversations with Tates team. But it also came with a fun visit that included our own dogs!
Tate made it outside today for PT and to meet up with Tim, Keira and all 3 of our pups. After a month away from home, it was an enthusiastic reunion! It was a great distraction while it lasted but came with increased pain and nausea for Tate afterwards. Remi and Rachelle even joined in the fun.
We also moved rooms today. Every 30 days we have to switch rooms so the room can be deep cleaned. We now have a Mountain View!
Tate got her first infusion of high dose steroids today. We think it’s already helping her tremors which is of course, wonderful, but also more concerning that the tremors are inflammation related.