Today marked Logan's first 'no decadron' day. Dr. T said that we should go to an every other day schedule to try to help with the hideous side effects we've been seeing --moodiness, joint pain, bone pain, headaches... the list goes on for pages-- and today was the first day he didn't have any in nearly two months. It started off well enough. He wanted to go to Fresh Choice for lunch, so we did. He ate a decent meal, and then we wandered to the centercourt overlook to gaze down at Santa, whose sleigh has already dropped him off at the mall for the holiday season. Ordinarily we'd be irritated by the early start to the fa-la-las, this year, as Adam said, it comes as a welcome change to the routine. After all, there are worse things than enduring 24 hours of cheerful music a day.
Then we headed to Target to pick up a few choice items. And sometime between the trip home and the middle of Cars 2 (which Logan was thrilled to pick up at Tarjay), the worm turned and he became a whiny, fussing, crying mess. He tried to take a nap but had little success; he's had a horrid time sleeping since starting on the steroids. Adam said he was up repeatedly last night, so of course he's exhausted and his sleep schedule is completely out of whack. Anyway, he awoke from a brief rest period screaming that his ear and his tummy hurt. We gave him some Tylenol, but he continued to scream that he wanted to go to the hospital so Adam and I took turns trying to calm him down. It's not a new thing for Logan to respond poorly to not getting enough sleep. Dating back to his infancy, he'd cry and scream when awakened from naps too soon. But that didn't make the sustained, ear splitting outbursts less painful or less pleasant. Or more acceptable. It's hard for me to keep my composure and not get angry when he lets loose. I am, after all, merely a person. I have no super powers of patience nor is it natural for me to heap generous doses of grace onto people who irritate me to no end. It's not that I don't understand that he feels awful; I certainly do. It breaks my heart all day, every day. But I am, as I said, just a person. And it's hard.
Anyway, Adam finally relented and let him go up to bed at 7. Hopefully, he'll sleep tonight. And hopefully Brady will have a repeat performance of unprecedented sleep-greatness. Because I cannot impress upon you how utterly draining this experience is when we're sleep deprived. Everything is harder, more challenging, more frustrating, more grating.
I think that's all I'll write for now. I could go on and on, but I'm tired and I never know how long I'll get to rest before someone short and demanding (but of course, also wonderful and precious) will wake me up. Thank you for continuing to pray for Logan's total and complete healing (because hey, you have to ask if you want it...) -- of the questionable spot on his spine, of the spinal radiation damage, of the aspergillus infection, of his tummy pain, of everything that's causing him discomfort. He deserves better than this. Thank you for interceding for us. Good night.