Still Alice was sad and upset when the doctors said no more clear liquids, however, she managed well enough. Maybe our previous conversation helped her accept the news more easily.
She received more blood today.
Most likely she will stay at least another two weeks to ensure her gut heals properly. Sadly she will need to stay on immune suppressants much longer now. It will be a while before we taper her again. Possibly two years before she is off immune suppressants. At that point if she rejects again we will consider transplant over again. Obviously we hope that her body will be happy with its new marrow by then; we still feel good about her transplant (donor marrow).
News flash--The whole warm antibody thing was inaccurately communicated. Apparently she does not have a warm antibody detected. This is big news and good news. Basically this simplifies things more. The doctors are starting to feel like they have a better grip on Alice's situation. Likely her blood lines are all attached to the GVHD process and once it is under control we assume she won't need more transfusions.
Alice and I had fun today making many many Valentines. It has saved us from being overly bored or watching too many movies. Uncle Josh came to visit again and went home with a Valentine for him and one for McKenzie with diamond rings to go with it.
We changed Alice's dressing today and she was given Hello Kitty slippers for being so brave. She was very happy about that. All in all she is in good spirits, happy, and sweet. I will say, if you want to see her in a bad mood tell her that you need to take her blood pressure. For some reason Alice has decided she no longer likes to cooperate when having her blood pressure checked.
Alice gets to have another sleepover with Aunt Amber tonight....FUN!
Natalie called me today and was so excited she could hardly talk. She kept saying, "I got a receipt, I got a receipt...over and over." I was so confused as to what she was talking about. Finally she slowed down and told me that she waited in the line at the dollar store all by herself, paid for her item, and received the actual receipt in her own hand. She felt so grown up and excited. She had bought a Valentine for Alice. Went home and wrapped it up with ribbons. What a fun moment in life; such simple things as this creates mountains of maturity.
|IV bags, IV bags, and IV bags....always something running.|