DAY FOUR - DIAPER DUTY

We had a much better night last night! Our night nurse, Marcus was fantastic, he made our boy comfortable, shared his incredible story and helped us cheer on the Steelers, he's all good in our book :) I was also able to meet another Mom, who is here with her 14 week-old baby(who was diagnosed at 6 weeks). Her daughter has the same diagnosis as Tash. We actually met through a Facebook group for infants with leukemia (its a small network but an amazing resource for us). It was nice to meet another person who is in a similar situation, although I would never wish this on another soul on this Earth but again grateful to have another person walking the path with us. She gave me some tips on the coming weeks as we are still "rookies" amongst the folks here. Daddy and Tash had a dance party in the room to NEEDTOBREATHE. They have good taste in music ;)

His counts came back pretty good today so we are hopeful for a calm today as he has another spinal tap tomorrow. He is NPO again tonight so hopefully we can keep him comfortable while he is hungry and unable to eat. Poor kid, the steroids increase his appetite and then we starve him out. He's all Hey, I'm a growing boy over here....FEED ME.

Every time he falls asleep its time for more oral meds or he needs a diaper change. Newsflash for kiddos on chemo in diapers, it creates what they call "bottom breakdown" essentially a bad diaper rash. We have to use gloves to change his diapers and they need to be changed every 2 hours so he's not sitting in the chemicals. We lather him up pretty good with Desitin and we have special wipes to use. We are going to go through both of those like crazy.

One of the PCA's likes Daddy, she brought him a new throne ;) 

Pray for his comfort tonight and positive news after his spinal tap tomorrow!