In the midst of all the care package wrangles - life goes on. And yesterday it went on fairly well. Because we can't take him on holiday (part of one of the wrangles.) we resolved to make sure he had a good number of special days out when he was well, and yesterday was one of those.
An important part was that he was awake for most of it. (Sleep pattern is in 'extended' mode at present - 48 hours awake, 48 hours asleep -ish.) Went to a good, hands on zoo that turned out to be very wheelchair friendly. He got to feel a python, was harrassed by lemurs, had a very close encounter with a cassawary and was licked by a giraffe. Avoided being peed on by a lion, didn't get bitten by anything and took in his surroundings most of the time - even on the journey.
A good day was had by all, with very few fits. Even the gastric bleed seems to be settling a bit. Only one minor problem with his feed pump and we enjoyed the day too. The whole thing made possible by a nurse voluntarily working a double shift - she know who she is - thank you.
These days are like islands in a sea of meetings, procedures, complaints letters and general harrassments and to be treasured greatly. Not sure what we'll do next year when he loses his mobility allowance, as it funds his adapted vehicle - but that's just another wave we'll have to surf when the time comes.