Post BMT +204
+204
Yesterday was a bucket list night. Lauren Daigle at Red Rocks. We bought these tickets back in May with our friends Elisa and Lilly. Both girls have spent more time in the hospital than out. To BOTH be out and able to go to the hospital feels like a miracle. It was a super special night and the girls did great. They were tired before it ended but enjoyed a full night! LD has been a constant soundtrack throughout this journey. To be in a beautiful setting with so many praising through song was perfect. So so thankful!
Appointments recap this week….labs looked mostly better. The adrenal crisis wasn’t addressed by bmt so we will talk more about that with our special care Dr. on Monday. GI was pleased with Tatum’s rebound from the WI hospitalization. PT with our home physical therapist has been approved. We are looking forward to getting PT rolling again with Abbey!
Today was rough on Tate. I’m hoping it’s just layover from a big night and not something simmering. Family medical camp (with our favorite Physicians Assistant) for Tate and I is Fri-Sun. Praying for nothing new so we can go and enjoy!. We were told to just stop the stress dose steroids for tate by the PA we saw from our CO BMT team. WI wanted her on a wean (which is what we usually do.) do. A quick stop on steroids for an AI kid is rough so I’m doing my own wean but wondering if it’s still too fast, thus the crummy day. This stuff is hard when you’re feeling your way in the dark.
Two of our little friends need huge prayers. Chloe’s scans today showed no response to treatment and new tumors. Options are truly gone and her dear family is making comfort measure decisions. Kody also had scans this week with unfavorable results. However, he is headed back to New York for a new perspective.