“I’ve got this”

Day 29:
“I’ve got this” such a sweet gift from a theater friend. So much love and thoughtfulness continually poured into us. Thank you to everyone! We are so grateful for all the prayers and support and send a smile gifts. It’s honestly overwhelming!

Today didn’t bring much in the way of changes. Last night was especially sleepless with heightened pain so they didn’t want to rock the boat too much. Tate did go on two walks despite her fatigue level. I’m so proud of her grit and persistence.

We did meet a new team tonight that I’m especially hopeful for. Irritable bowel disease clinic came to see Tate. She doesn’t technically have IBD, as Behçet’s is in its own category. But they have a GI Dr. that has a PHD in immunology and works closely with Tates immunologist. They will look at Tates immune dysregulation and although they’ve never seen a trisomy 8 kid like this, the genetic component of her diseases in relation to GI. They also have very specific meds that work like steroids but don’t have the systemic side effects. Rheumatology is concerned that we’ve seen no results from the new immunosuppressant or steroids. Lots of tests on tap that will hopefully show improvement in the ulcers. Tomorrow is a big care conference with many of Tates specialists and inpatient teams. Praying we come out of it with a solid plan to move forward.