...we've had to adjust to new sleeping schedules. He has his most important medication (cyclosporin) at very specific times: 6 am, 2 pm, and 10 pm. I had been going to sleep between 8-9 pm. So when the Captain is working every other week, I have to stay up until after the meds are taken and then I have to wake back up to give him the meds again. And because he's been attached to a pump for nutrition and/or liquids the whole time, he's got to have help getting to and from the rest room.
...I've spent nearly ALL of my time and energy working on getting food and drink into this kid. Since his appetite is very little and his stomach has shrunk, I have to make every single sip or bite count. I've been experimenting with oils and other additives that will supplement healthy fats and calories. Looks like it is working because at his last clinic visit, he'd gained a half pound. Still, force feeding him is draining. Today my son said he was going to kill himself with a knife or a scissors as a response to my reminder that he needed to start eating his lunch. Of course, I also have a husband and two other children to care for. I'm not sure how but everything is getting done. I can barely lift my arms. But it IS getting done.
... I've tried to get my act together with a new organizational system for my day and my "homeschool". It's working. I'm achieving my goals and I'm loving dry erase boards more than ever.
... Any sign that "the old Hunter" is back makes me crazy with emotion. Sure, some of that emotion could be the result of weaning Drayken, who was just recently a voraciously nursing toddler. But some of it is certainly because of the hope I receive with any glance at the child I once knew. For instance, just today he decided to work on creating a scavenger hunt with his Toy Story toys. This had to involve a list. He was once quite the list maker. I'd not seen him make a list since his diagnosis. You can bet I'll be hanging on to that piece of paper. And a few days ago, he set himself up at the kitchen table and made all of his dad's roast beef sandwiches for the remainder of his work week. He did quite a good job and he was proud of his accomplishment. He worked happily for at least half an hour. He was stress free. So was I.