To be fair to wheelchair services, they did come and mend the damaged wheel the day after we rang them. Replaced it in fact, also replaced the other undamaged one - not sure why. Anyway, obsolete one retrieved, current one mended, all's well with the world.
We've had him back at home with us for a couple of days and for once he's been on quite good form. Not too many fits, sleeping a bit erratically (but that's not unusual) and had some very relaxed evenings with him just sitting with us watching TV in the dark. (He is photophobic, so we often try to keep the lights down, using his stained glass window for illumination.) It sounds quite boring but in fact it's not. The quiet times are fairly unusual as it's usually quite busy dealing with fits, airway suction, tube feeding, medications, toileting, bathing, changing position for pressure relief etc. etc.. We treasure these times we get him to ourselves and he isn't too ill and I think he likes the chance to chill out a bit now and again. When his sister's at home, he just sits there and looks up at her - it doesn't need any words.
Oh, and we've had some nurse applications - big celebrations! Lets hope they're OK.
Friday, May 28, 2010
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