This corrosion

The boy gets weaker day by day.

The wife's lie in. My day with the boy. Despite a broken night the previous night the boy was up bright and early. He was happy to watch TV between the yawns. But secretions constant, making it tiring to do constant suctioning of the trachy.

The consultant came over for a flying visit, having not seen him for a couple of months. What a contrast for her. Then Granny came, so I got the boy downstairs. We did the usual painting things. The boy's coordination of his right hand gets worse. He is very shakey. Rather hit and miss whether he gets what he's aiming for. After getting me to mix a wide range of colours, he painted a picture of my red and yellow T-shirt.

The wife got up. I got breakfast before she went off for her weekly psychiatrist session. His home school came over and I took the opportunity to strip his bed (he has vomited in the morning for the last two days) and remake it.

By the time I came downstairs, the boy was looking tired. I persuaded him to go to bed and I would read him a story. He lay down, had a nebuliser but would not go to sleep. After almost an hour, we came back downstairs and re-started painting. The wife came back with a new book. But the boy wanted only to know the name of the book and go back to bed. Didn't want the wife
to come up with him. This time he did sleep.

Didn't want it to ruin his night, so only let him have 45 minutes. He was hard to wake up and only the arrival of auntie stopped him going back to sleep. He did more painting, lurching forward from his chair to get the colours to be mixed. His drooling getting worse as the day wore on.

Despite a last minute tantrum, we got him bathed and the tapes changed. He even washed my face for the first time in ages. He still does his pre-bedtime routine but is so, so weak.

It is so incredibly tiring to look after him. There is always something to do: suctioning, preparing medicines, keeping his right eye lubricated, dealing with calls from someone medical, anticipating in his play and changing the toys every few minutes. It never stops, now that he cannot get anything for himself and his concentration span is reduced. Work was harder than being at home a month or so ago. Home is now infinitely harder work. Exhausting and not necessarily enjoyable.