Tuesday, August 30, 2016

'Normality'

There is no such thing as 'normal' in Sams life.... or ours for that matter.  Routines and schedules often get to Plan D before breakfast!

Today and yesterday Sam managed to get hooked off his pumps and get to school for a couple of hours in the afternoon.  It has been so good for him to be back doing 'normal' things - lunch time he played hop scotch with his friends - so nice to see him out in the sun enjoying kid stuff.

He was home for an hour before he was whisked back to Starship, for a night with Dad.  This hour is great for him as he can have a bath, choose a book, play with his own toys and hang out with his sisters.

Today he had the added bonus of a surprise visit from his cousin Jordan and Aunty Janice.  They have been faithfully following Sam (& Bees) health updates.  In light of Bees recent medical undertakings, they felt it was right to share their Dolls wheelchair with Bee, while he/she/it (?) fully recuperates.  Sam loved whizzing Bee around in it and Bee looks forward to having a ride each day he/she/it returns home - sometimes things 'walk' in hospital and are never seen again, so this will stay at home!


We are hoping that the next 3 days of this week, will be much the same as today - hook off in hospital about 10 am, 40 minutes on the motorway to school, 2 hours at school (meds and drains at 2pm), 1 hour at home, 40 mins (or anywhere up to 2 hours!) on motorway and back in for hook up at 6pm. The good news is that Sam is putting on about half a kg each day, now that he is back on IVN.  He is looking healthier and those cute cheeks are even more sqidgier and kissable-r. Yes I know neither are good england!

The UTI seems to be taking a back seat with 4 x day oral antibiotic and 3 hourly bladder wash outs.

Right, off to sleep, ready for another day. X

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