March 24, 2025
Day 53 & 54
3/25/25
Not a lot happened yesterday for changes, but the day was busy! Tim came and brought some Birthday gifts. The generosity and kindness is seriously mind boggling. Most of you we’ve never met, yet you love our girl like your own. Tatum even received a gift from one of her elementary teachers. She was one someone that was present when things started to deteriorate for Tate and did so much to support Tate and our family. I can’t explain how touched we are to know she’s still thinking of Tate. Our gratitude continues towards her. That was such a difficult time as we didn’t understand the brain inflammation component of Tate’s disease and there wasn’t a lot of understanding at school outside of some sweet teachers. Summer Stallings, Thank You! For then and for now.
I will try to connect with those whose names I have to give personal Thank You’s. AMZ sadly took their “Send a thank you” option away. For those that signed with a heart or not at all, and those I cant seem to find to send a message to, Thank You! You’ve brightened many days to come. And Tate still has more to open at home.
Removing the fentanyl has made Tate’s pain worse again. Her IT pump did get increased by 10% yesterday. We would see improvements today, but nobody is holding their breath. For pain…we will likely go up to the belbuca max of 900mcg in the next few days. Today Tate is getting her outpatient scheduled dexa (bone density) scan. Tate previously had osteopenia, so we’re hoping for improvements.
The sweet Dr. in the photo is Bella. We love her. Wicked smart, a fierce advocate and amazingly kind human. She spent an hour after shift just hanging out with Tate and filled both our cups. We’ve really had the best residents this admission. I can’t say ive ever felt more supported. Yesterday I was in conversation with a specialty team. And our senior resident Gabe spoke up to support me on Tate’s behalf. It sounds small but is so big. It doesn’t take a lot. But people have the power through small gestures to make a big impact. Being present is all it takes.