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!

To every mother who worried about their child’s first fever… who always overpacks their day bag just in case they have to suddenly be away for at least 3 days without modern-day life… who couldn’t remember which side the baby last fed on… who uses their cellphone picture log as a brag book… who’s domain name might as well be snapfish.com… who goes to bed at 1 a.m. finishing work, only to wake up at 5 a.m. to a crying baby… who has witnessed unbearable suffering on their child and could do nothing but hold them, or sometimes nothing at all … who’s ever given up the chance of a lifetime for a more secure future for their kids… who has been spit up on, thrown up on, made on, peed on, pooped on… who swore they would never repeat the mistakes her own mother made with her… who let their kids play or eat without worrying about the mess… who let their kids be who they are without judgment or criticism… who has gone to every little league baseball game, basketball tournament, or graduation… even if it meant not being able to do something you wanted to do… who has bandaged wounds, egos, and hearts all in the same way, who has made every decision like it was being backed by the UN… who made the best possible decisions given the circumstances, no matter how difficult the circumstances were… who somehow found a way to be strong even when strength had run out… who always found a way to smile with their children even on the darkest day… who always put their kids first… who always put their children first… whose capacity to love only grows as each child does… Happy Mother’s Day.