Weekend Update... part 1

So yesterday was a good day after the huge ups and downs of wed and thursday. The medication schedule is sorted out, pain is being managed way better which means less episodes. Last nite was looking good, but as it seems to be happening every few days, the blood came back again. We really don't know why it is happening, something is going on in there, maybe a combination of the meds, we are just not sure. So Natalia didn't sleep since 2am. I came in early am and things were stable, Erika, who does amazing physio / massage with Natalia came in on the weekend (on her free time by the way) to help. I can't tell you how much things like that mean to us at this point. Simply incredible to see people go out of their way to help Natalia. We won't soon forget things like that. So now Natalia is sleeping on the bipap and isn't in pain which is pretty much all we can ask for.

3 months 1 day on the waiting... (at the top of the list if i can add).