Thursday, February 2, 2012

Settling in once again (day 36)

As I am less tired tonight I hope this post sounds a little more confident and less sleepy. We had today free from clinic visits so it was wonderful to spend the day setting up a schedule and learning the ropes and such. Pipers medication list is long as are her CVL infusions but now that we are on the 3rd night here I do believe we have things on a roll. Just putting on regular clothes in the morning verses wearing our pjs makes the day a little less sluggish as does lots of walking the halls. Piper has snacked her way through the whole day... black olives, Mac and cheese, nerds candy, sliced cheese, baked potato, buttered noodles, banana with pb on it, pancakes dipped in syrup, sausage patties and marshmallows. Granted, most of these things were only nibbled but I am thrilled with her desire to eat...if only she would drink more than sips of water. I can tell we have watched a lot of Curious George because the girl walks around saying "George? Where are you?" just like the man in the yellow hat does..melts my heart. While Piper is inpatient she often falls asleep to a movie but at home it's not an option. Because we are in a home setting I have returned us to the regular schedule of books and cuddles and then a kiss goodnight. Of course she is still up to 10:30 because of various CVL access I must do but still it works for us. Piper even requested to sit on the potty twice today and I swear if this girl learns to walk and potty train post a bone marrow transplant I am going to be amazed.

Medically she is still doing great. No news yet about her chimerism testing but her counts are doing good things. Pipers CMV copies dropped yet again down to 2,200! This is wonderful news and I praise God for it. Hopefully this trend will continue and we can move Pipers antiviral from IV to oral soon. Tomorrow after a morning clinic visit we will have an afternoon guest and then tomorrow night Linley and Chad will be here for the weekend. This weekend I plan to go get a pedicure with Linley and work on Valentines while Piper naps with her daddy.

Throughout this long and nicely mundane day I have stopped and felt an overwhelming sense of rightness. We are many days and many tests away from having my girl cured but to have come even just this far is a blessing that I cannot ignore. Piper has the chance to beat the cancer...too many other little ones that I know were never given the option and won their fight in an entirely different way.

1 comment:

  1. I love that girl! She melts my heart and makes me go all mushy all over :) Tell her Aunt Mimi says she is AWESOME! Make sure you do the cheer that goes along with it...