Busy time. Son was at home on our part of the shared care arrangement for a couple of days. Had a tired/sleepy time apart from evenings when he chilled out in bath and watched TV etc. He'd just finished one round of antibiotics for a recurrent boil when he developed a urinary tract infection - so back on a different antibiotic and lots of fluids. On top of that, his gastrostomy 'peg' (the tube that goes through his stomache wall) was also due for changing, he copes with just panadol for this - changed OK.
Not sure what else to say - we tend to be a bit shellshocked these days after our couple of days a week with him. I can't really remember what it was like before we had the shared care package with a full nursing team. Until he was 18, we had him pretty much all the time and took turns to collapse - my wife did considerably more than I did as one of us had to work (in our house - me). the only places that would take him for respite were the Childrens Hospices for a few days a year. I do remember sleep being a luxury, and we still seem to eat faster than anyone else, probably out of habit. But things are much better these days and we're beginning to get a life, though it is very strange and we're still the flexibility and backup in the system.
Meanwhile he has a life of his own - trampolining tomorrow, if he's well enough. He's certainly got a better social life than us - but then so he should have at 27.