Finally got his BP down and he had his Avastin infusion on Friday, 48 hours later than planned, which meant 48 more hours of deterioration in his physical capacity. His hands are now completely clenched and by lunchtime today, could not hold himself in an upright sitting position, and could not raise his hand to his mouth to feed himself his favourite snack! Letting gravity take his head and chest towards his hand was his only option, but then needed assistance sitting up again.
This is devastating progression in such a short space of time. Yesterday, his elbows became locked for periods of time, his musculature clearly being distressed by whatever is happening to his white matter internally. Skye was admitted to hospital last night and will be there for the next few days, while they restart the high dose steroids. We are hoping that this will halt the progression of his decline. Where we go from here - no idea! Still hoping for some sort of revelation or miracle!
It is a consolation that his higher level functioning is still pretty good, and he can talk to us, and even crack jokes but if the current decline continues, we are only too aware of where it will end.