Day +56

I haven't posted a picture in a while. I will try to get one later today. She definetly doesn't look the same. Still cute but now with a few chins (steriod weight) and dark eyebrows. they look more and more like her Dad's everyday. I tease him that she finally looks like him.

She might get a day pass tonight. Meaning we could go drive around in the car. I guess that would be a big adventure after being stuck here for so long. Not sure if she would even enjoy it at this point. We'll see.

Also there are rumors of possible discharge early next week. I'm taking it with a grain of salt. We've had discharge dates before. Don't want to get excited till they actually say "Go home". Her blood cultures have been negative for 3 days, meaning the infection is under control with the antibiotics. We have 9 more days of IV antibiotic to ensure it is all gone. We are changing doses around on quite a few on the meds to try to get the levels right. It's been frustrating. Her cyclosporin level was too high (over 500) so they skipped a dose (this is the med that stinks and is oily and she has to take orally) then the next day it was too low (125). It should be between 150 and 250. So after the 125 they gave a bigger dose which sent it back over 300 and then skipped another dose to bring it down so it came down to 105 so they gave a bolis plus and increased dose. It was 214 yesterday and we'll see what it was today. Cyclosporin is an anti-rejection med that is very important to help deal with the GVHD. We are still dealing with GVHD. Please pray that it doesn't flare again, that it goes away completely and doesnt' come back. Also pray it doesn't become chronic.

Most of the day Livi is pretty sad. She says home often (even in her sleep). Without medicine she doens't sleep well at all. Pray they figure out all her different levels, doses, counts, and GVHD so we can get out of here and see the Livi we know so well. Every once in a while we get a glimpse of the care free little girl. I can tell she wants to be happy and wants to laugh and be silly but she is just sad. Also please pray that she will want to walk around more. She doesn't want to walk unless we make her. Steriods can make you feel so different and make you not want to walk. But we need to keep her moving cause steriods can also cause fractures or osteoperosis and so we need to know if she just doesn't feel like walking or if something is hurt.

thanks to Erin for all the fun gifts and for hanging out with me. We love seeing you.