Daddy came today and brought the tinker bell moVie shes been wanting. As soon as she saw him she said "tinkerbell" LOL. Followed by "I love you" I told daddy the trick I learned yesterday to get her to say I love you. Usually if you say you love her she says " I already know that" but when I do the I love you hand sign she says " I love you" too funny. So of course tinker bell went straight to the DVD player. It was a cute movie and she liked it. Then she did a lot of coloring and crafts. I went and bought her 4 new puzzles today and she keeps wanting to do them. She is very good at them.
she had to have the dressing changed on her central line today and she did awesome. They have to change the covering every week and it is painful cause it is really stuck on there. She is good at taking deep breaths and calming herself down. I told her she was going to be good at having babies someday. Then I realized she most likely won't have any biological babies if she even lives that long. You are born with all the eggs you have and all the treatments almost certainly have killed them all off. Oh well. That's the least of our worries. That is a conversation much much much later down the road.
Anyway, they put her on a pain pump today and it seems to be helping. Her mouth is starting to break down. Her bones hurt a lot and she has had a lot of nausea and puked up almost all of her feeds which have been going around the clock now. And only at an ounce an hour and she still pukes. She is on a few anti nausea meds. She is still a happy girl and brings a smile to everyone through it all.
Tomorrow is transplant day at 2:00, It doesn't take long and is much like a regular blood transfusion. I'll let ya know how it goes :)