Here’s some lovely brightly coloured plastic keeping this lovely boy entertained! We had a great morning making some Lego (thanks again to Billie’s Fund), playing with a big football and working together on his medications.
I’ve had discussions with the nursing team today about sorting Kip’s medications for when we are discharged; there are eleven regular (daily) medications we need to give, so our home life when we go is going to be very demanding, very busy and involve a lot of bottles and pills! It shouldn’t last too long but there are a couple of meds that Kip will be taking for the rest of his life; quite a sobering thought but seriously such a small price to pay to have him around. I’m already getting anxious flash-forward worries about him being a rebellious teenager and refusing to take it… One. Day. At. A. Time.
Visits today from the teacher (Kip learned about living on Mars and whether or not you can get to Jupiter for a holiday) and the play team; he’s getting to use his brain and get a bit more active as well, though he tires very, very quickly.
Speaking of brightly coloured things, this evening I’ve just update the list of beads (see previous post) for the first time in nearly four weeks… The list comes to about 250 different coloured beads to make up the record of Kip’s treatment. That’s a good little job for some of my days off, putting each little bead on the string, should take about four hours!
Kip gets flushed off his drips tonight and is only connected to his feeding tube (that sounds grimmer than it is; a nutritious milkshake going straight into his stomach). We start encouraging real food in the next couple of days and have all of his medication orally. Quite a big change!
Kip’s sleeping nicely as I write, after a significant poo-n-puke event a few minutes ago; he drifted back off to sleep listening to Winnie The Pooh being read by Alan Bennet, by far the most popular bit of entertainment during this admission.