Haley’s Giggle

By now, most of you who used to visit this blog daily are in direct contact, and so this news is really for those who are way too far away to do so. Friday was Haley’s last day on the Tacrolimus, the medicine that was keeping GVHD at bay. I took a picture of the last syringe’s worth of medicine, thinking back her first dose the very first day of transplant more than a year ago. It was monumental and uneventful, as Haley was asleep for it. What was supposed to happen was nothing of note– her skin was supposed to look the same, her eating was supposed to be no worse at least. Unforunately, that has not been the case.  In the past two days, her skin has erupted in excematic rashes, and her eating has dwindled. I’m going to give it another week, dousing her with every topical lotion she has, and starting her off in the morning with fat-laden tortilla chips.  I want to give her a chance to declare herself before resigning her back to the tacro. I want to give her body a chance to breathe. Sounds hokey I’m sure to most people, but this girl has never ceased to amaze us all, including her doctors and nurses, and maybe she’ll get up on her own two feet and climb out. She does have an appointment with the GI doctor, so we’re still covering her bases in the event she doesn’t just walk this off in a while.
Speaking of which, Haley is sort-of walking while holding on with only one hand (the other is usually occupied with “fish” who has replaced the now-forgotten “dragonfly.”). It’s a very slow process, and since she’s not really bulking up, it’s going to continue to be a slow process, but there’s nothing this girl can’t do.
Speaking of which, this weekend was Haley’s first time in the water! First the pool, then when it got too cold, the hot tub! Of course, she had to hold “fish” the entire time. But at least he can swim.   She also pet a rabbit and a goat at a petting zoo– first time besides Pippie (Grammy’s fluffy french bijon) that Haley’s ever touched an animal. No worries, though, plenty of purell was at hand.
We had a wonderful Memorical Day weekend, and we hope you all did too!