Bea has been home for 8 days now and is still doing quite well, all considering. She is by no means living a normal life but it's the closest we can get so we'll take it.
We've set up a hospital bed in the living room so that she's in the mix all day. She doesn't seem to have trouble falling asleep when she's tired so noise isn't an issue. And, this is the center of our annual Christmas decorating and we want her to enjoy the season as much as possible.
It is difficult to tell what she's thinking or feeling because her facial expression does not change significantly, except when she smiles. We have found that viewing old photos of herself does make her very sad so there's no more of that.
She's on a fairly regular sleep schedule, which is good for all of us. Chris and I are taking turns sleeping in the living room. Bea needs constant monitoring as well as a dose of Tylenol every 4 hours. So, it means someone has to be in the room with her pretty much every minute of the day.
We spend most of the day caring for her physical needs, reading her books, watching videos and having occasional visitors.
So, that's what our life is like today. I don't know what it will be like tomorrow. I usually don't even go there. I have today and try as much as I can to focus on that.