Wednesday 26 January 2011

In order of preference

Temptation to wash hands irresistible.


Tuesday 25 January 2011

For Catherine

It's not exactly low profile.
but I suspect you might be able to modify it - or find one that is. It's a Christmas tree connector thingy rater than luer lock, so potentially easier for thick syringes. Went in more easily than the button.

Mog has her button back now though - oh, and I'm told you can get extension tubes which go in straight, without the right angle bend. Again, may make things easier.


Wednesday 19 January 2011

A Mog Merry-go-round

Start the day in a good mood, hurrah.

Watch your sister go off on the school bus, humph.

Realise you're going to hospital for an appointment, hurrah.

Sit in your wheelchair seeing less and less and less as the ridiculous hat your mother made you wear slips slowly down over your eyes before finally coming to rest on your chin, humph.

Arrive at hospital, and see your favourite receptionist who waves you away into a corner, hurrah. See your friend who has moved away but has an appointment at the same time as you, double hurrah. Hear both mothers make plans for coffee post appointments, triple hurrah and a big body kick.

Realise your appointment is now 90 minutes late, humph. And that you are seeing the registrar, not the consultant who brings a sparkle to your eyes, double humph. See the consultant at the end of the appointment, hurrah.

Finish your appointment at the same time as your friend, whose appointment has been similaraly delayed, hurrah. But discover you have to go and have bloods drawn, and your friend has to go off for a different test, humph.

Finish both tests at the same time, and hear the mothers plan for lunch instead of coffee. Hurrah. Wait at the lift, watch in disbelief as most people get out of the lift and then instead of waiting for us to get in, the remaining couple of people press the door closed button and continue the downwards journey. Humph. Watch the lift stop and flash an "Under Maintenance" message. Decide it might be a hurrah as you weren't in it at the time.

Remember the other lifts, and escape to the coffee shop. Eat a chocolate muffin and laugh lots. Hurrah. See the gastrostomy nurse, meaning the only nurse you missed this visit was respiratory.

Get back in the bus and drive home, wince as your mother knocks your gastrostomy button. Wince more when she decides you've been doing too much of that lately, and so whips it out to swap it for a new one. And wince even more when she totally fails to get the new one in. Humph.

Laugh as you get to listen to Norah Jones whilst your Mum calls for reinforcements. Laugh more when the reinforcements arrive, and even more when you are full of diazepam and pain meds, given through the temporary thinner tube. Hurrah.

Wince really quite a lot, despite the diazepam and painkillers as Mum and the nurse try hard to get the new button in. And fail. Humph.

Watch your Mum pack for a hospital visit, and then panic slightly when she remembers your sister needs to go to Rainbows. Oops. Watch Mum heave a sigh of relief when the nurse calls the gastrostomy nurse - the one you'd just seen at the hospital - and agrees on a plan of action which involves doing nothing more tonight. Gear up for Rainbows. Hurrah.

But I'm predicting a big humph when the nurse comes back tomorrow morning to have another go, and an even bigger one if we still can't do it and end up on the day ward.


Monday 17 January 2011

On reflection

Fond as I am of baths, and pleased as I am with the many bottles and packets of sweetly scented bubbles and lotions, I can't help feeling that, perhaps, on reflection, the Christmas Pudding novelty bath bomb may in fact have been an unfortunate choice.
I usually bath to get away from this.

Saturday 15 January 2011

Mummies who Munch

Most weeks, I meet up with a fairly excellent bunch of women. We drink tea and coffee, we eat lunch and cake (not necessarily in that order), and we talk. We rant together about the ridiculousness of the petty stresses we shouldn't have to deal with, about the unreliability of feeding pumps, or the utter hideousness of tidal waves of mice in the shed. And we laugh. With each other, and at each other. A lot.

Sitting alone, I might find the endless round of cleaning up different varieties of bodily fluids deeply depressing. With friends, friends who have all done similar things, the retelling becomes an excuse to repeat all our top "Code Browns", and each becomes funnier than the last. And when friends like these get together in the middle of January for a big post Christmas Christmas (because Christmas itself got too busy with sick children and busy families and just life generally), and when the code brown conversations are combined with a presents of prettily wrapped bath smellies, well, then you know you have friends who knew you'd appreciate them even before they read your blog. That or you can worry you really do smell quite bad quite a lot of the time.

And then when friends swap presents for their families too, you get to spend a peaceful Saturday watching this

and loving this
and relax and read a book as one child spends an entire afternoon with an etch-a-sketch and a Peppa Pig album, and the other insists on modelling her first outfit straight away, and giggles for the next three hours when she sees the NEW CLOTHES. And enjoy the fact that both girls have things they want to wait to do with Grannie and Grandad too.

This friendship is special. We all have children who are vaguely Mog-like in their disabilities and unpredictabilities. We all therefore have more or less accessible houses, and remain unfazed by empty catheter wrappers left glued to the bedroom walls after a visit. There's a short cut in the conversation (although you wouldn't think we'd left much out, if you were sitting at the next table) where you don't have to explain the short night or the need for the telephone to be on and fully charged and sitting by your elbow. We can celebrate one child's smile whilst worrying about an other's "not quite right-ness". And we can recognise the subtle seizures, and poke and prod at each others' children, and all be mightily entertained when small children do silly things like falling off their chairs. Comedy is tragedy postponed and shared with friends.

And, for something completely different, howzat for a Toad in the Hole?
Which has absolutely nothing at all to do with this post. I'm just chuffed to have finally beaten Yorkshire Pudding Batter into submission.


Wednesday 12 January 2011

Would you rather?

WARNING: This is NOT a post for the weak-stomached. Non-carers may wish to back away now.

So, Sunday morning, there I was all dressed up for church, and then there I was, with the elderly contents of a suction pump cascading down my back and into my pants.

I thought I'd reached a new low. There's something about cold bodily fluids, so much more unpleasant than ones still at body temperature. Reach round into a wheelchair to straighten a child's hips and come up with a hand coated in poo? Annoying (where are those spare wheelchair covers?), but not too gross. That squidgy warm sensation when you realise the child on your lap has just overflowed their pad? Ho hum. Even the great tidal vomit of 2004* was somehow less disgusting in its freshness.

Stale suctionings were, I thought, a new low point. Until today. I emptied the nappy bin. The liner in the bin split as I was emptying it, and somehow, a used anal catheter leapt out of the bin and hit me in the face.

So my question for today is, which would you rather?
My supplemental question would be, anyone want to come and look after the girls whilst I go on holiday somewhere far, far away from here, with endless hot water and expensively luxuriant bath foam?


*The Great Tidal Vomit.

Long ago, when Mog was just a little wee thing, she used to sit on a Tumbleform on our kitchen table. Wedged between the wall and the 'fridge, she was beautifully safe, and perfectly placed to join in with our mealtimes. Goldie used to sit facing her, and I'd sit between them, where I could slow Goldie's eating down and try yet again to wedge another teaspoon of mush between Mog's reluctant lips.

We had savoury rice one night. Mince, rice, cheese, veg. Nicely prepared, deliciously scented, reasonably mashable, and apparently good enough that Goldie wanted two big bowls of it. Possibly a touch over seasoned; at any rate Goldie was also extremely thirsty and had a couple of drinks too.

Meal over, I pushed Goldie away from the table to reach around her and wipe up the debris. It was at this point which Goldie opened her mouth and poured forth not just two helpings of savoury rice, but also her lunch, and even the Weetabix, toast and poop goop she'd had for breakfast that morning. Together with all the drinks she'd had for the past 24 hours. With impressive velocity, she managed to hit the opposite wall. With remarkable spreading capacity, she managed to coat myself, the table, the floor, and the 'fridge. Oh, and herself too.

Mog, showing early promise for the daintily elegant child she would grow into, sat quietly beautiful, Piedro-booted feet tap dancing gently in the ocean of vomit, the rest of her totally untouched and apparently unaware and above such things.

Where do you start? Dripping with vomit, I stripped myself off rather than spread it further. I then stripped Goldie, and used the cleaner bits of her and my clothing to do an initial mop up. Depositing Goldie on the shower trolley, I hosed her down, mopped the floor and finished sorting the cupboards, and then, shivering, opened my bedroom door to find myself some clean clothes. I flung the door open and walked into my room. Heading for the wardrobe, I approached my large, ground floor, window. And realised that much of the population of two local secondary schools was walking down the road, staring back in at me. Dropping to the floor, I commando-crawled across the carpet, reached up towards my wardrobe and blindly tugged at whatever I could reach, throwing it on ducked down under the window and then attempting to gather what little dignity I had left and walking out of my room without a backwards glance.

I bought net curtains the next day.

Sunday 9 January 2011

Sunday AllSorts

Sometimes my life seems to sum itself up into a series of Facebook Statuses (Stati?). Unrelated snapshots from the day.

Thus, this morning: Nor day nor night no carers.

Despite the lack of carer, I manage to get us mostly ready for church on time. Two of the three of us have brushed our teeth, using three of the four toothbrushes available to us. Two of the three of us have suffered to have our hair brushed, but not with our favourite hairbrush which has been left in Shropshire. Two of the three of us have had breakfast and one of the three of us has had a pint of tea. This may not be the best plan immediately before church. One of the three of us has picked up the suction pump, swung it across her shoulder, then, forgetting it is there, leaned forwards to pick up a candlestick, sending a deluge of cold and cabbagey suctioned secretions cascading down her back and into her pants. One of the three of us may never feel totally clean again, and is considering DIY dermabrasion. This same third of us is thinking that suction pumps ought to come with sealed containers. And an alert to remind carers to empty after use.

Later morning: A good service; always nice when God shows up too. I'm left wondering which Jesus I know best right now. Afterwards, a kind woman asks me how long I think it would take her to become familiar with the girls' needs, as she'd like to start babysitting for us.

Throughout the day: Tia is enjoying the King James Version Bible readings on BBC Radio 4.

Later: Tia is still enjoying the KJV readings but finding the Peppa Pig soundtrack to be a somewhat surreal accompaniment. Mog's chimes, on the other hand, add a certain "High Church" atmosphere.

Still later: Tia is hoping there will be a CD available at some point, because the readings are too rich to try to fight a losing battle with noisy children and hungry cats. And because Mog might enjoy listening herself as a change from Norah Jones one night.

And now: Tia is still feeling unclean, unclean, following the unfortunate suction encounter. Carers remain absent, and whilst Tia would be feeling smug about having managed to get both girls into bed and asleep slightly earlier than with the carers present, a brief glance around the room reveals the things Tia has not been doing in order to accomplish this.

Tomorrow, school for both girls and then a hospice trip for Mog. So now, bath with a Brillo pad or blitz the house to avoid embarrassment when tomorrow morning's carer arrives? Sadly no carer tomorrow either, so I'm guessing bath wins out,


Friday 7 January 2011


"Oh wow, Mummy, this is absolutely FUNDERFUL! It is amazing to be outside and it is night and we are in the water and it is hot and bubbly. "

One hot tub. Definitely the highlight of LF's week away. Myself, I'll vote for the company, closely followed by the cottage, but 'll go along with funderful as a description.

One very lovely holiday cottage, far bigger than it looks, with a very lovely fireplace. One set of insanely steep and twisty wooden stairs, making getting four wheelchair-using children into bed interesting. But a piano, a hot tub, a washing machine and a dryer and a dishwasher, a giant garden, and sand-proof (don't ask) quarry tiled floors; one very relaxing week.



Thursday 6 January 2011

Music, maestro!

The only thing better than making music by yourself
is making it with a friend.

And the only thing better than a duet for voice and chimesis cuddles!



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