Scarlet Update

I'm a little behind in blogging. Sorry about that. Things have been going well so far outside the hospital. It's been so much fun staying at the Ronald McDonald house. We had Grandma Debbie come and stay for a little while, then Charlie came again and now my sister Anni is here with me. Scarlet's clinic visits have been going well. She has a new attending physician, Dr. Carpenter, well, we've had him before. He is an expert on graft vs. host disease which is comforting if she starts to have anymore skin rashes, etc. Her skin has been clear and she only throws up occasionally now-still keeping our fingers crossed that she will stay that way.have to give her her GCSF shot...looks like weekly but is really as needed. Fortunately, it is a little insulin needle now and not one of the big needles I used to poke her with. She does really well with it. She is still on a handful of medicines and her IV meds as well. I used to run her IV meds 2xs, morning and night and now just morning with a hydration bag before and after her foscarnate. They decided to switch because she is accumulating a lot of phosphates and they don't want to strain her kidneys. She still has CMV, but the copies are low. Hopefully they won't rise with only one anti-viral dose a day.
She had to have a blood transfusion again on Sunday which meant an all day clinic visit at Children's. Her platelet counts have been staying up on their own now and it looks like she won't need another platelet transfusion, hopefully ever. Yesterday was day +50, which means only 50 more days left and we can leave.
Charlie is still busy working on the house. He's still got a lot to do.
I'm posting some shots of Charlie and Scarlet while we were still in the hospital. They are pretty cute.