A Day in my Life

It's the 14th again, and Little Jenny Wren is hosting A Day in my Life again. Thank you Jenny.

My day started far too early once more, with a Mog call at 3AM. Music, medicines and some moving around the bed and she did thankfully re-settle. At some point later on Comeback decided to get vocal, but I didn't have the energy to climb out of bed so turned my deaf ear up and slept some more, before being dragged out of bed finally by the alarm going off at 6.15.

Up (slowly - gravity working overtime today) and kettle on for coffee. Morning routine as last month - two girls up and into wheelchairs, breakfasted and ready for the day. A Tuesday, so both girls off on the school bus this morning.

Time to sit down. I am just thinking about my second cup of coffee when I remember the large pile of branches in the back garden which have been there since Saturday. So forget the coffee, out to the garden, carry them around from the back of the house past my upstairs neighbour's front door and drop them onto the front garden, ready to load into the van.

I knock my neighbour's terracotta pot over, shattering it into a thousand tiny pieces, spreading fired clay and a weird assortment of twigs, tissues, and general stuffed-into-a-pot detritis flying. Oops. Neighbour not around, so I stuff an apology and a banknote through the letter box and hope for the best.

Now to load the van.
I may not have thought this through properly.
On to the local tip, where four members of staff stood and chatted as I removed half a tree from my van and posted into the garden waste composting skip.
and then a quick race home for a weed-free jumper, before heading over to school to collect Little Fish. Next stop town; our destination the GP surgery. "I not poorly Mummy I not need doctor". No Little Fish, no doctor, just a nice nurse with a couple of long needles to stab into you. Thankfully one nice nurse who was happy to inject legs rather than arms, so Little Fish's left leg is now full of measles, mumps and rubella, whilst her right leg has whooping cough, diptheria and possibly TB, I lost track at this point. Little Fish is anaesthetic from the waist down in theory. However she definitely noticed the needle going into her right thigh, and possibly into her left as well. Ordinarily this would be great news, however she needs major reconstructive hip surgery in the next few months - if she is going to develop sensation down into her legs I'd really prefer her to wait until after they've broken bones and inserted pins and done everything else they need to do.

The nurse looks through both girls' lists of immunisations and decides that we all three of us need to make appointments to get our annual 'flu jabs, and in addition both girls need to come in for a pneumonia vaccine. Lovely.

We collect Mog's next month's supply of inco pads before we leave, then potter around the shops for a bit before coming home. Lunch is swiftly followed by a visit from Little Fish's physiotherapist plus a student physio. Too swiftly; the kettle has boiled but my coffee has not been made. Little Fish is not inclined to be cooperative, and refuses to sit on the ball, allow the physio to examine her legs, or do anything other than play with the zip on the student's nice pink cardigan. Despite this, some physio gets done somehow.

Mog gets home, and the physios leave. And the phone starts ringing. Hospital staff from two different hospitals with three different problems. Office staff with an extra problem. Someone trying to sell me a time share in France. Speech therapist, hospital again, and the local supermarket. Both phones are now beeping with low battery indicators.

Our next visitors arrive, my social worker and a colleague who used to be involved with both girls and wants to catch up with us all. A good chat, marred somewhat by a distinctly scratchy Little Fish. Nevertheless she manages to impress the social workers by her ability to sort Mog's feed pump out when it starts beeping, and by putting her bib in the washing machine after she has finished eating. Neither social worker wants coffee, so I do without too.

More phone calls; our carer ringing to say she will be late, and hospital phoning to tell me to discontinue one of Mog's medications. They want her to come off it straight away without reducing it slowly, something which may cause her to go into status epilepticus. I'm so pleased. Hopefully not taking it any more will stop her evening screaming.

We are still chatting happily (social workers in the sitting room, not hospital doctors on the phone) when our carer arrives. We like this carer. She walked in, saw that we were busy, and immediately went to get the bathroom ready for the girls. Persuaded Little Fish to have a shower with Mog so I could carry on talking without being interrupted, called me in to sort one minor little hitch out, and just quietly got on with things until things stopped needing to be done.

Social worker left, our neighbour (a different one to this morning's neighbour) popped in with a parcel which had been left when we were out. Nothing exciting; a packet of tights from Debenhams. That handed over, I helped the carer finish dressing the girls and started posting them into bed.

Little Fish was in bed and tired by 7. Mog was in bed and medicated by 7.30. Little Fish went off to sleep straight away. Mog has cried and complained and sobbed and screeched and hiccuped and choked and cried some more and is continuing to do so. She has had painkillers, she has had sleepy medicines, she has had cuddles and she has had music. And she is deeply unhappy, and it is only in the evening, and I don't know why, and I don't know how to help her. The neurologist wants to give her three days off her newest anticonvulsant and then try her on sodium valporate again. We tried this a few years ago and she simply fell asleep for a week. Right now, I'd almost take that over the evening screaming. But then she came out in a rash, and I'd rather not take that again. So we will try this medicine and see how it goes. Chances are though that it won't be hugely helpful.

Two girls in bed, I have a bowl of pasta for my own supper. During one of my attempts to settle Mog, Comeback decided he preferred pasta to Whiskas.
Is this, or is this not, the face of a guilty cat? He's lucky I'm too tired to drive back to Stadhampton tonight. Only one cup of coffee all day will do that to a Tia.

And now it is nearly 9, and Little Fish has been weeping again. Mog weeps on, beyond tired, eyes closed and unresponsive, just a quiet desperate cry. I have one more medicine I can give her tonight, and I would prefer to leave it for a few minutes longer. But she can't go on like this.

So that's my not especially wonderful or cheerful Day this month. Looking forwards to reading about other people's Days; hopefully someone somewhere is having a nice peaceful relaxing one!
Tia

edit. It is now 10.20PM. Mog has gone to sleep - without her sleepy med. Little Fish is still a little unsettled but mostly asleep. And now my upstairs neighbour is having what might have started out as a party but is now loud music, neighbour screaming and shouting, other voices trying to calm her down.