trying to document this experience so that we can look back and see how far we will have come. recording the sad moments are so hardโฆ today has been a sad one. for the first time avi girl is just not herselfโฆ sheโs sad and uncomfortable. itโs so hard to watch and be unsuccessful in comforting her. today we took a walk and it was the first time avery left her room for over a weekโฆ just so many emotions today.
– mama
They were unsuccessful at the LP again today. Avery just wouldnโt sit still for it; even with some nitrous.
The good thing is they didnโt stick her today. They couldnโt get her comfortable enough to do the procedure.
They wonโt try again until the next scheduled one on Day 15. Weโre on Day 10.
They hope to come up with a better plan by then. Otherwise today has been about keeping Avery comfortable.
She is beginning to feel some of the pain of the chemo and they are going to try some IV meds to help control the painโฆ and allow her to sleep.
Sheโs been awake most of the afternoon unable to stay asleep.
