Ally is still dealing with some pain and it was bad at 7 am, but we switched from IV morphine to tylenol with codeine. We are going to see if we can handle that throughout the day and maybe discharge and go home this evening. If she needs one more day, I’m okay with that too. I’m still LOVING the new medical director of the PICU, Dr. Harris. Still inconsistency with RNs and RTs though. We do have an RT we had 1/2 a shift this stay, but he only peaked in post surgery, so I trained him this morning on Ally’s treatments. I could just do them myself, but I really want to let others help and in turn, it might help other children with SMA. I will continue to advocate for change and consistency for ALL our kiddos.
Praying hard pain is under control and we are HOME SOON!
Angel Ally Blog - SMA Type 1 
I’m still here and thinking of you/praying but lots going on here and I haven’t been good about updating. Hope you’re home!