Lily went off to catch the bus to work this morning after a long telling-off from me for yet again not bothering to unload the dishwasher ( her chore which it has been for ages and which she is supposed to do every morning before even eating breakfast) and for not bothering to comb her hair after her night time bath so that it stuck up everywhere. I have to keep reminding myself how lucky I am that she is fairly independent and able to help with housework and bath herself.
A friend was passing as I returned from taking Noah to school and told me she'd just seen Lily outside our house being picked up by her supported employment supervisor - she had missed her bus and obviously decided not to call me as I'd already shouted at her.
The bus timetable had changed today with very little publicity and certainly not enough for Lily to be aware of it. This meant Lily had missed the bus - it had sailed past her on the other side of the road at an earlier time than usual (You might have expected the bus driver to notice and stop for her - after all she has been catching the bus three mornings a week for over a year so you'd expect him to recognise her)
Then at lunch time Lily was unexpectedly returned home by her supervisor who said that Lily had hardly been able to work as she was so tired - Lily said she didn't get much sleep last night because once we'd gone to bed she had got up to search for Harry Potter on the computer and then played the Harry Potter game on her playstation until late (Lily has no idea of time so it may have been very very late).
I have now removed the wires that connect the playstation to her monitor and she slept all afternoon appeared for tea saying she felt sick and her tummy hurt (I wasn't very sympathetic as she has ignored everything I've suggested she do to prevent her constant constipation) then went to bed straight after tea.
Noah meanwhile has developed lots of nasty spots on his legs. We thought at first they were insect bites with the worst one maybe being a white tail spider bite, but they got worse through out the day at school. I'm pretty sure they are a staph infection probably as a follow on from the infection he had in his foot. We had staph run through he family before - Lily very easily gets boils, I got horrible pus filled blisters and Paul had spots from shaving. It took months of anti-biotics and anti-septics to get rid of it.
Noah could hardly walk with the nasty spot on his leg, so I gave him some of the antibiotic left from his foot (until I can get a new prescription tomorrow) and put him in a hot bath with some of Lily's chlorhexidine wash. He made a lot of fuss as we washed his legs really well and luckily the main spot burst by itself.
Luckily Paul hadn't returned the first aid kit he was given to use as the first-aider at Special Olympics, so I was able to dig out some dressings for Noah's leg.
Noah is tucked up in bed now, still a bit miserable insisting that there is a "very sharp pineapple" in his leg! (I think this is a description of how it hurts)
Always, always, the kids get sick when Paul is away but tonight he's only in Wellington for the evening and should be back soon after midnight - he'll be amazed how much can happen in such a short time!
Isaac for a change is the healthiest of our trisomy tribe. He attended paediatric clinic and charmed everyone. He is back over 12kg again now and has grown 2cm since December. The paediatrician was very reassuring about how little fluid children really need - I had been worrying because if you search 'fluid requirements' on Google it says children need a litre a day for the first 10kg they weigh then a bit for each extra kilo - Isaac gets between 400 and 600ml a day all from his food none from drink.
Isaac has finally been discharged from the home care team (the nurses who for the past four and a half years visited our house and weighed him, monitored his SATS did any dressings, provided medical equipment and reassured me!) WELL DONE ISAAC!!
143 days....Weird Goal, huh?
5 days ago