Another rough day

Well Taylor was again in a lot of pain and irritable. Taylor has sores all over in her mouth, unsure why, lots of potential reasons from vomiting, when her tongue was swollen she could have been biting, etc. but because all the neuro team was in surgery they were still waiting for someone to come look and then okay drugs,medicated  mouthwash at 8:00pm....a super long day for a child in pain to wait. Taylor was hungry but due to sores and pain and no okay from the busy neuro team she went with out last time I saw her around 8:00pm. My hope is that she got some relief after I left, but I don’t know.

They are out of PICU, in 4D recovery room called and ICE room. Yesterday Taylor did not want visitors, only her mom and dad. I’ll try to update later if I get some more information. We will hopefully get biopsy results and begin to look at what happens next. Please keep praying, hoping, wishing and sending strength to Taylor, Mindy and Landon. This is a battle. I intend to win with Taylor getting better, and I’m not accepting anything less. We have done this before and we will do it again, one step at a time.