June 15, 2024
June 15
I don’t have anything super big to share. Friday Tate saw rheumatology and pain. And overall just had a good day. She walked into both appointments which hasn’t happened in a while. It’s a long way from the ramp into the hospital to the clinics and we usually bring her chair for at least part of it. Her walking brought BIG smiles from her Docs, so happy to see her pushing hard so soon after her discharge and doing well! It was a good day!! We even stopped at Target afterwards. Just normal, fun things that we’re so grateful for.
Tate is wiped and hurting a little extra today, but that is how it goes-like a good workout.
Tate has really been struggling with sun sensitivity and temperature dysregulation. As well as heart rate fluctuations and other autonomic symptoms. Seems like lupus and POTS and EDS all rolled into one. The sun causes pretty quick nausea and rashes even through the car window. We saw this pre-transplant, but it seems to be coming back. Makes summer fun a little more challenging.