"Making it work.", it's what we do.
This has been a very full week. We've been trying to settle in and re-familiarize ourselves with our home and daily routines, while juggling a large volume of phone calls, nursing visits and life with three kids.
Wyatt's health seems to be at somewhat of a standstill. His LFT's (liver function tests) are all greatly elevated, he's significantly jaundiced, his pain continues to be difficult to control, his belly is distended and tender. Physically he's limited by pain and discomfort, though we continue to try to get him upright in his activity chair at least once a day when possible. It wipes out what little energy he may have had and often times leaves him more uncomfortable through to the next day, but we do know we must keep those muscles doing something each day. He may not be able to move about freely on his own, though he could very possibly be the best bed scooter and blanket kicker in this part of the country!
While settling back into our home, we're also becoming accustomed to and working out the kinks with hospice care. I think once things all fall in to place that we may have a very good team in place for our boy.