December 25, 2002
Merry Christmas everyone!  Anna has now been off the ventilator since 10:00 a.m. Monday morning.  What a Christmas gift.  She has done great on room air since then and is recovering from being completely still for 10 days.  Last night was a little rough - even moving her blanket slightly made her scream in pain.  I tried to hold her, but since every little movement was so painful for her it just wasn't comforting - for either of us.  For about 35 minutes I stood over her bed trying to encourage her to take the pacifier and finally she took it - it seemed to keep her mind off the pain to some extent.  At 11:00 p.m., the nurse gave her some Versed (the sedative she was on while on the ventilator) and that did the trick.  She didn't wake up until around 10:00 a.m. today (not counting the times the nurse had to do vitals, of course).  I gave her a bath, but the Versed had worn off so I had to be quick, and put on a Christmas outfit.  She's so cute. After the bath, new clothes, and some more Versed, she decided to have a little snack.  After pumping every three hours for 13 days it was quite a feeling.  The nurse turned off her feeding through the tube - if all goes well the tube may come out today. Well, friends, daddy's here saying that my daughter is hungry.  Gotta go!

December 26, 2002
The morning started out with the nurse finding Anna in her crib playing with her feeding tube. Why wait for the doctor to remove it?  I got up twice last night to nurse her so she won't go hungry.  Dr. Hanson came this morning with good news  - blood counts holding steady (not normal, but not getting worse).  We thought that she may have needed some blood products today, but that wasn't needed after today's numbers. Dr. Hanson even mentioned the "H" word (home!!) for this Saturday.  Her white blood counts are still very low so she would be safer at home where there is less exposure to germs. We are heading to Children's Hospital tomorrow for our "phase I" transplant orientation.  Anna needs a bunch of tests prior to transplant so they are starting those now while we are here.  Next week, we will have to take her to children's and also back here to St. John's for a bone marrow test.  She'll have to be sedated for the latter, but it's an outpatient procedure so we won't have to spend the night.  All in all, she is doing great - smiled at both Mormor and Morfar this morning.

December 30, 2002
We are home!!!  We got to go home this past Saturday and it was quite a feeling.  When I walked in the door I felt for the first time how completely exhausted I was - both physically and emotionally. It is so good to be home.  Anna has adjusted well. Last time we got home from the hospital she had a hard time adjusting and didn't sleep well the first few nights, but this time she did great.  She is back on the steroid and eating a lot again.  Last night she ate at 9:00 p.m., 12:00 a.m., 2:00 a.m., 6:00 a.m. and 9:00 a.m. just to give you an idea what I'm up to at night.  Am I complaining?  Not at all, I love every moment of it.  After the past few weeks it is a joy to get up each time.  Today, we went back to Dr. Rob's for blood work.  They were having a hard time getting blood again so Anna had to do some aerobics (arm lifts, head turns, crying works too) and finally they got enough.  I hope it gets better - I'd hate for her to have to go through surgery before transplant to replace the tube.  Numbers holding steady so we are cutting her steroid dose in half!! Tomorrow we are heading to children's, Thursday back to St. John's, Friday back to children's....  We'll be busy for the next few weeks.

December 31, 2002
A Donor has been found!  The bone marrow transplant is planned for January.  More details to come…