A new normal…

Amanda finally had an assisted shower and hair wash today. So when I arrived at lunchtime she was sitting on the bed and dressed in her own clothes.

Earlier the nurses had sat her in a chair and taken her out into the sunny courtyard area. They asked my permission to put special straps on her next time (careful not to call them ‘restraining straps but that’s what they are), as she tried getting out of the chair which she is actually physically incapable of doing – she just doesn’t know it.

She knew my name today and the kids. I asked her what her dad’s name was and she said… “dad.”

I came back at dinner time and she managed to use a spoon to eat apples and custard. The speech therapist is happy enough with her swallow reflex to allow her to drink normal, rather than thickened liquids, but they haven’t yet tested to see if she can come off pureed food. Also no more insulin now she’s off the nasal-gastric feed.

Once I’ve checked with the dietician I’ve promised to ‘smuggle in’ some treats.

By 6.15pm she was tired out and ready for a sleep, but couldn’t believe it was so early. I might have to get her a cheap digital watch so she can keep track of the time as she keeps looking at her wrist for her watch.

Hopefully some actual speech therapy and physio tomorrow.

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