Day +44

Alivia's liver function numbers continue to rise even though they have stopped all meds and IV nutrition that might make them rise. So starting today they are upping her dose of steriods to a little more than double what she was getting and also adding a med called Remicade (which she is getting now). If neither of these things work they will try an experiemental treatment that is a T-cell infusions.

She is a bit crabby lately (I'm sure I would be super crabby if it was me so a bit is no big deal). She just seems unhappy more often. She was up every 45 min to an hour last night just calling out my name and wanting me to stand by her bed and rub her back. She would quickly fall back to sleep but as soon as I walked away she would call out for me again. It was a long night. She also needed a new diaper 4 times. Dad came at 8 this morning and around 9 she was awake enough to let him hold her so I got back to bed for about an hour. Mom has been sick since yesterday so she has had to stay away...we miss Gigi. Cynthia returned from her week in Colorado today and its nice to have her back. My dad will be heading to Indiana again this week to get some work done.

Our house is coming along slowly. We are hoping to get it done before we get discharged so we can go straight home instead of to the Condo. I would be overjoyed to go to our house and not the condo. I will go there if need be but to be at home would be ....I can't put into words how that would feel. oh well.

thanks to the Garners for the sweet card and pics of Jude (he's getting so big!), to the Rice's for Mr. Potato head and the glamour clothes, to the Spinetti's for the Polly Pocket and the visit (I loved meeting your sweet girl) and to Jill Piper for the generous gift.

Also thanks to Andy and Sonya for a great Friday night. James and I are both so thankful for friends like you guys. We know we will always have the best time with you and look forward to the next time. Have fun on your trip!!! Take pictures so we can pretend that we went too.