Yes, it has been a while. I like to think it's because I've been incredibly busy, which I have, but a good part of it is that I have to actually sit and contemplate what to say, and there are times where dwelling on the reality is just...too hard. You can make it through the day by taking it minute by minute, but if you sit down and dwell on the full reality it's all just overwhelming.
Will attended a friend's birthday party in December. It was cold, and the party centered around a full blown airsoft battle, and Will really wanted to go. So, his brothers helped ensure he had sufficient gear, he spent the afternoon running through the woods shooting his buddies, and he had a blast. One of the moms asked if Will was going to handle this ok, and I shrugged and said, "He'll be sick in two days, but this is the most fun he's had in ages." It was also the most activity he had had in ages. He has been in physical therapy for months, but Will was challenging his body in ways it hadn't been challenged since his Make-A-Wish trip.
Two days later...he was sick. When he gets sick, he gets really sick. And he crashes. A lot. The next two weeks became a daily battle to keep him out of MCV while knowing it's really what he needed...but he kept looking at me and stating that he wants to be home for Christmas. Can you blame him? I just can't. So we gave lots of IV fluids and prayed and gave even more IV fluids and prayed some more.
And he has been really difficult to stabilize since that time. We keep infusing more fluids, and he just keeps crashing. I talked with his physical therapist today and he recommended that I call Dr. T tomorrow. The question is...do we put him in the hospital for a few days to give him a boost that will hopefully get him back to baseline, or do we just keep doing what we are doing? What is the definition of stupidity? To keep doing the same thing expecting a different result? That's not working for me so well...When he gets 5 IV's a week, which we've been doing for a few weeks, then maybe we need an alternative solution?
So tomorrow I'll be calling the amazing Dr. T and seeing if she has any pearls of wisdom.
As for the lovely Miss Caroline...well, I'd like to give you answers. But I don't have any to give. She clinically looks like a candidate for surgery, but the neurosurgeon here states that her images don't support that conclusion. We do have an appointment in Cinci in May with Will's neurosurgeon, so we'll see what he has to say. She is currently at a sleep study to determine if sleep apnea is an issue. It would provide another piece to the puzzle of how well her brain stem is working...Stay tuned for those results...I may actually blog them before June. :)
If you have time and want to see what Chris is up to...check out http://candidcameraphotography.blogspot.com/2011/12/smoke-photography-next-up-how-to-take.html or http://www.wix.com/cmc451/candidcamera/main-page#!__main-page/about. He's done some amazing things with his new camera...