Sunday 31 January 2010

A wheel let-down

This is the picture of a happy child, freewheeling her way around a friend's garden.

Today, not so much.

Little Fish's little chair has two very flat tyres. They've been spongy on occasion before, and a quick go with a bicycle pump has brought them back into action. But not this time.

So, anyone got any ideas? Her chair is an Otto Bock Minny wheelchair. The tyres are standard for the chair, but apparently unique to the chair. Otto Bock no longer make the Minny, and the company we bought it from no longer operate in this county, and will charge us heap big money just to come and take the chair away for six weeks (if previous repairs are anything to go by).

She's not totally immobile; she has her power chair and she has her school wheelchair. Neither of those chairs sit low enough to the ground for her to pick things up off the ground though, and she's a little lethal in the power chair in our house. I know our doors wouldn't survive it, and I fear for the fishtank too.

So for the moment, she's choosing to sit in the pink armchair and have things brought to her. Oddly enough; I'm not overkeen on this continuing for too long.


Saturday 30 January 2010

Mog's haul

Mog had some late Christmas presents arrive last week, including a handy wodge of cash. With this burning a hole in her pocket, she was rather keen on the idea of heading into Oxford to pick up some longer trousers.

We hit Debenhams, and Mog made her choices. Discarding black jeans and blue jeans and orange fleecy things, she decided these purple beasties were the only trousers for her. She deigned to accept the denim leggings too, but anything else was carefully kicked off her lap and onto the floor.
Little Fish was less impressed with the suggestion of spending her precious Saturday shopping. Not even the promise of Grannie and Grandad to keep her company was enough to take her out of the sullens. But eventually she was coaxed into thinking a new pair of school shoes, big enough to fit over her new splints, might just about be a good reason to leave the house.
For reasons best known to the shoe manufacturers, it's impossible to find black shoes in her size. But navy blue has to be an improvement on pink with yellow ducks. In most people's eyes, even if not her own.

Walking past a sales rail or two, we had to pick up some essential supplies for our holiday next month - both girls have picked up new pyjamas and dressing gowns. Which they both decided they needed to get into as soon as we got home. Tia

Thursday 28 January 2010

Did you know?

That if you put pepper down to discourage the cats from pissing under your daugher's bed, and that if the cats piss there anyway, and you put the smell down to your daughter's interesting bowel habits, and so don't clear it up immediately, the piss and pepper form a cement as solid as anything Weetabix left under a highchair can achieve?

That if you shut two large cats into a small sunroom so you can open all the windows and doors in the house whilst you remove the cement from under your daughter's bed, they will in fact discover all the stray tent pegs and poo on them?

That if you have a cleaner who is turning out to be truly excellent, she will, on the same day as she reveals she has a Nelson Mandela Certificate in Caring for Children with Cerebral Palsy, inform you that she's leaving to go back to care work?

That if you decide it's finally a mild enough day to plant out the tree which has been living in the cloakroom for the past five weeks, you will, in doing so, trek mud and manure through the house ruining the finish which has just been achieved by above-mentioned cleaner?

That, just when you have finally removed the last layer of piss-cement, and rescrubbed the hallway to remove the manure, at the very moment you are revelling in the sweet scent of mint and eucalyptus cleaner, the small child with the interesting bowel habits will giggle wildly, kick her legs, and produce the most evil smelling drippy chocolate-fondue-from-hell poo on the planet?

I give up.

Tuesday 26 January 2010

More on Mog

This was the straightest we could get Mog this morning, after her regular morning meds, which include a couple of muscle relaxants. And this was the straightest we could get her after two of us had given up trying to wrestle her into her chair and had given her a goodly slug of diazepam.
But this was Mog this afternoon, when she had managed to kick our visiting toddler on both of his ears simultaneously!
That's my monstrous Mog!


Monday 25 January 2010


Little Fish had a long awaited playdate today. A schoolfriend coming home with her for an hour. A very confusing concept yesterday and this morning, until she got to school where it was suddenly a very exciting idea and had to be shared constantly with all the staff and other pupils.

Mog and I walked to pick them up from school, and they appeared, hand in hand, small girl in a wheelchair and larger boy being dragged behind. "Mumma, I got a FRIEND!" she squeaked, pulling him along behind (and occasionally under) her wheelchair and bossily directing him down the road to our house.

Picking up on the excitement, Mog kicked away under her blanket, and looked around for friend's brother, who happens to be one of her own schoolmates.

Two small people take some occupying. Friend was here for an hour, so I had planned some serious post-school bouncing around in the ball pool to burn off some energy, a nice prolonged sandwich and biscuit fest, explore some of our toys, possibly some drawing/puzzles/games, a few DVDs lined up, and some plain biscuits ready to be iced if necessary.

Thankfully, the walk home took us longer than usual. Because, five minutes after we got home, every item except the iced biscuits had been tried, sampled, completed, abandoned, strewn across the floor, tried again, enjoyed, tested, and finished.

Scary stuff! Little Fish and Larger Friend amicably bickering, Larger Friend a willing slave, picking up pens and organising paper (with neither child actually colouring anything), me willing them to find something they'd both engage in, forgetting they were both actually happy flitting, and worrying that it would all somehow fall apart.

It didn't; they found the guitar (note to self: find someone to restring it; five ancient strings really don't work so well together), they strummed and pottered, and Mog sang and insisted on being very present. The cats objected and ran, cowering, under the nearest bed.

And then, just as it was starting to begin to get a little hair, with larger one wanting to play outside, littler one willing but freezing, and myself all too aware of the mud-and-cat-poo field our back garden has turned into, friend's Mum turned up and playtime was over.

Just about an hour, including the time it took to potter slowly home. And just about long enough. It was so nice to see Little Fish as she was though; not her usual home self at all. I think I got a glimpse of who she is at school, and I think I can see why she doesn't want to go to any of the Birthday parties. Short times, home turf, and she was happy. Think it might be a while before I'm ready for another one though!


Sunday 24 January 2010

Next verse, same as the first

Chest infection again. Antibiotics and painkillers and steroids and suction suction suction suction suction. With a side effect of masses of air in her stomach, something she's been struggling with for the past few days but we're now back to venting her every 30 minutes - 1 hour. I hope that settles once her feed finishes; could be a long night if not!

Picture has nothing to do with Mog but is too lovely not to share.

Update on Mog

So, having spent the day trying to coax Mog's body into bending, she settled off to sleep after much twitching and a goodly dose of sedative. Only to wake at 3, cold and shivering. I tucked her up, propped her more upright as she was bendier and wasn't impressed with being flat. And then this morning I awoke to the sounds of a gargle gargle drown snort pant pant panic, and discovered her with a raging temp and a massive seizure.

Her chest sounds rubbishly full of grot, so the question now becomes; has she been brewing this hence her discomfort and spasm over the past few days, or is the result of not being upright as much as normal?


Saturday 23 January 2010


You've heard the old excuse "The dog ate my homework" - here we give you a new variant "Sorry, Miss, the cat ate my home/school book." Oops. Kindly ignore the hole in the floor; those responsible for fixing it seem to be managing it; such a shame it's not quite as easy for those of us left living with it.
I think it's safe to say Gotcha has found his confidence now; he shakes out his mane as he demands not just food and a clean litter tray these days but fuss, attention, cuddles, and someone to shake his toys for him.

I remain a little concerned however at the amount of time he spends online, and the sites he visits. Someone needs to tell him it really isn't his colour.
Meanwhile, poor Mog has been having a rotten day.
She woke up this morning rather stiff, so I dosed her up before trying to get her dressed (please excuse the outfit; she wasn't impressed but it's all loose and her arms weren't). And then tried to get her into her wheelchair. And realised I couldn't. She perched on the edge, sobbing, and then managed to plank herself into the position ably demonstrated here, where she promptly stuck for the next three hours. Pain and spasm and more pain, lots of wind and her left side locked tight and immobile. She fought off diazepam, until I added painkillers, at which point she finally subsided into some kind of peaceful sleep for an hour or so. I tried to de-kink her, and she woke immediately and started crying again. So much for that.

We eventually found a comfortable position; or rather, she eventually found a comfortable position. As this involved her lying face down on top of me, one of my legs wedged between hers to stop them twisting, and with her elbows propped on my shoulders, it wasn't exactly the most comfortable position for me. But, twenty minutes of it and she suddenly relaxed and flopped in against me.

Still no chance of getting her into her wheelchair, but she did at least de-kink herself enough to slump into her comfy chair.Physios, please avert your eyes; it was the straightest I could get her back without her hips locking again.

And suddenly, she was happy again. Needing to be burped every thirty minutes, but inbetween, giggling and kicking and wriggling and definitely out of pain again. Unless I tried to straighten her up. I realise though, this is the first day in a fortnight it's been just me here in the mornings. We've either had carers or I've had a friend here, and it has taken two of us to fold Mog into her wheelchair every day for the last two weeks. I don't think that can be good, can it?

Meanwhile, Little Fish had a party to go to. Except that she didn't want to. Why not? "Acos I don't want to." Many many tears until I finally agreed to phone the Birthday girls' Mum and send our apologies. Cue one very happy little girl who spent the day doing very little; trying to stroke Mog's feet to make her more comfortable, and practicing her writing. And that, with a little help from High School Musical, some multi-sensory additions from the other cats, and a rather tasty butterscotch pudding, is the essence of our day. Two girls are now sleeping - Mog wedged into a somewhat straightish position but with her head apparently attempting to inspect the back of her neck, and Little Fish wedged into a differently straight position with a soggy sleeve firmly planted in her mouth. The cats are prowling, begging or their last feed, and my back is feeling the after effects of wrestling with Mog's spasm. I'm off to bed.


Thursday 21 January 2010

Variations on the theme of brown.

This is the view I get on Tuesday evenings now. Mog and her six, working together. It's beautiful - one writes in her notebook for her, another checks her answers, occasionally they call over to me for information they need but more often they check with Mog herself. They danced this week, and choreographed their dance so Mog could join in with kicking legs and her air-guitar hands. And Mog won the weekly Brownie Shield for joining in so well. Lovely.

A less beautiful brown is the brown I'm washing out of everything; she is having a problem with her Movicol these days and I'm not convinced it's quite fright for her any more. For which experienced carers may read, I'm fed up of having to hose her down from neck to knee on a daily basis, and the whiteness of her school uniform is starting to suffer.

A nastier yet brown would be one of the many colours inside Little Fish's Gastrostomy. We had an appointment with the surgeon yesterday, who was unfazed as the brownish yellow slug of pus shot out of the stoma towards him with the removal of her button. He was sympathetic but unfazed too by the blood curdling screams Little Fish uttered as he attempted to silver nitrate the excess tissue around the site. And pointed out as I winced, that she had started the screaming before he touched the stoma at all, so it really wasn't pain related; a fact borne out by her ability to switch off the screams instantly as he stepped away, and to recover herself.

Next step; find someone to help silver nitrate it at home or face the prospect of having to drag her back to hospital once a week until it's gone. Fun times. I'm thinking the hospital itself may be willing to send someone out on home visits; if she screams as loudly as she did this time then the anxiety levels in the waiting room are likely to be growing ever higher. Although I suppose with scared children running for the exit, the waiting times for the remaining brace ones might come down to something less than the 90 minute delay we had to sit though. Which in itself wouldn't have been dreadful, if another child hadn't already selfishly discovered an effective way to beat the queue puked all over the floor, chairs and play table.

Little Fish in a brown study all the way home; thinking deeply and not able to concentrate on anything minor like staying awake or eating tea. Or following her own evening routine, meaning I'm reasonably confident there will be brown studies of a different kind to deal with this morning.

Three cats ready to welcome us home last night; all three immediately raced through the door into the pouring rain. Not normally an issue; Goway can take care of himself, Grolly will run around for a few minutes then be lured back inside with the promise of yummy treats, and Gotcha generally runs down the ramp, realises it's all cold and wet, and then bounces back up again. Not tonight. He clearly heard the call of the wild, and decided to chase around the cul-de-sac, under cars and over hedges, bouncing and running and generally celebrating his freedom.

So far, so annoying, but nothing more. I shook his giraffe-on-a-stick which normally has him racing back to kill and destroy. nothing. I shook it again, and a Little Fish heard him cry. Jingle jingle, followed by a faintly desperate meep meep meep. Repeat ad tediam. Heading out into the rain I went to investigate the cries. And found that he had wedged himself between a fence and a hedge. The way out was easy, but involved retracing his steps through our neighbours' garden and moving away from the house. This he was too scared to do, wanting desperately to come back inside and have food and fuss.

Making a long arm, I hauled him through a gap in the hedge, where he clung to my shoulder in a desperately pathetic "I'm just a tiny kitten and it's a great big scary world out there" manner which would be taken more seriously if he weren't so big and heavy my shoulder was struggling to take the strain. He was however terrified. Longhaired wet muddy cat with terror induced incontinence; a whole new layer of brown to deal with.

So for the cat experts out there - I tried bathing him but he wasn't having that. He consented to much wiping and pulling and trimming with scissors, but I wasn't convinced our Original Source Lime showergel was the right thing to use (so didn't!) - but for the future, what's the best thing to do? As it is I've now got a newly ventilated cat with gret bald patches. And despite my best efforts and his, we've still got the odd brown bundle clinging around his tail and back legs.

And now I've got an "I waking up, Mum, MUM" in my ear so I had better go and start the day.

Tuesday 19 January 2010

Caption please!

Because I walked in on this, and my mind has gone blank. But he definitely deserves something!


Monday 18 January 2010

Who needs toys?

As Goway looked on
The younger members of our family found my newest acquisitions
And decided to party!
Do you think I could teach them to fold and her to do the rest?

The post we've all been waiting for

Not wanting to steal my little brother and sister in law's thunder, I've been sitting on some BIG EXCITING NEWS for a couple of days now. But I see they've finally broken internet silence, which I assume means that a) they've phoned everyone who needed to be phoned, and b) they've actually had some sleep since the main event.

Welcome to the world, baby girl!

I'm very glad you didn't call her Gaviscon. Although Val, short for Valoid did have a certain ring to it.

Auntie Tia and the England-based cousins

Sunday 17 January 2010

This green and pleasant land

A heavy rain to melt away the snow, and then a beautifully sunny afternoon. Only one thing to do - drive over to Blenheim Palace for a walk around the grounds. It's possible the most of the county had the same idea; we certainly found three sets of friends just in our little potter around the lake.

I am intrigued to know what lies beyond this gate - a different world perhaps? And with ice still curling around the edges of the lake, I'd like to know how these fishermen got their boat out onto the water.
There's something deeply peaceful about Blenheim.
And although Woodstock itself was full to bursting, although all the carparks inside the grounds were heaving too, somehow the grounds accommodated all of us, leaving plenty of breathing space.


Saturday 16 January 2010

Click Happy

The trouble with internet grocery shopping
is that it's easy to get carried away.
Oh well; at least it won't go off...

Friday 15 January 2010

Life saver

These things save livesPrevent injury, prevent death. For the sake of a fiver or so.


Thursday 14 January 2010

Displacement Baking

A shiny new (or good as new, anyway) oven, another day stuck inside, and a difficult day tomorrow. What's a girl to do? Tie on an apron, and bake. It's possible I went slightly overboard; I now have two chicken and dumpling casseroles, one vat of cauliflower cheese, an equally large vat of chocolate and oatmeal pudding, and a vast tin of Cornish Fairings (gingersnap type biscuits).

My oven is still shiny and new, and it is a positive pleasure to be able to smell the intermingled scents of casseroles and chocolate rice, rather than the thick black smeech I've been breathing in whenever the oven was on lately. The oven seems to be running a little more quietly too; I dread to think how many drips it takes to seize the fan up like that! I think we should be just about set for meals for the next month few days; Mog enjoyed a multisensory bakefest, and I feel as though I have achieved something.

Sadly although the oven is shiny, I now have a mountain of washing up to wade through, and need to find out whether my casserole dish is freezable. Eating the biscuits and dumplings does much to stave off thoughts of tomorrow though.


Wednesday 13 January 2010

Especially for Alison

Your wish is my command!

Woke up this morning, checked, and discovered both schools open as normal. Then had phonecall from carer cancelling, shortly followed by information Mog's school shut, closely followed by information that Little Fish's school opening late. Little Fish is using Mog's buggy to get to school
Which means I can't push Mog in it, nor can Mog drive LF's powerchair (which doesn't like this weather very much). Another friend to the rescue; handy having friends who work in the school which has closed. So, one Little Fish wrapped up warmly and escorted to school by mad friend who then walked through snow flurries to do shopping on other side of town entirely, getting home just in time to set out again to collect Little Fish for meAnd whilst Mog snoozed to her music, and Goway searched desperately for a warm spot to wee outside
I settled down to some of thisBeen a long time in coming but finally Gotcha is beginning to accept his role as a self-insulated hot water bottle. Now if I could just teach him to jump up rather than biting my toes until I lift him...

The BBC says it's raining, my window says it's snowing. One school says it's shut and the other says it's open tomorrow. Mog is giggling wildly; very pleased with herself. That's the last time I give her extra movicol before checking that school and carers are on.


Tuesday 12 January 2010


One appointment cancelled due to bad weather.
One appointment rearranged for a less convenient time.
One price slightly higher than I was expecting
One shovel borrowed again from our neighbours in order to dig out the van after the engineer tried to park it on the front garden - what was a pretty layer of snow over a large and empy bed of soil is now an interestingly bespattered brown and grey sludgy goo.
Two hours of shutting the cats into the sunroom and listening to them yowling.
Two hours of freezing as the engineer took bits and pieces in and out of his van to soak and steam and scrub and degrease.

Totally worth it!
Wish I'd had the courage sense to take the before pictures. Let's just say, before he got here I managed to chip a solid layer, 12 inches wide and 1 inch deep, of carbonised rice pudding and fish pie off the bottom of the oven. I don't think it matters how long I might have spent though; I'd never have gotten it looking like this again.

So, do you think I'm justified in now refusing to cook ever again?

Monday 11 January 2010

But then...

Today was one of those days which started out one shape, and ended up being a different shape entirely.

The plan; two girls to school, a blissfully empty house ready for some serious relaxation, a visitor, an extra carer, and then Guides.

But then...the school bus was late. Not very late, certainly not the 2.5 hour delay my friend had, but just that bit late enough to make the school walk a run against the pedestrian traffic for Little Fish and I. We chickened out of driving her powerchair to school; she borrowed her sister's all-terrain buggy and snuggled into a sleeping bag for the ride. Very cosy. No pictures; we were running late.

Still, into school, slither home slowly, and prepare to relax and enjoy the silence. But then the cleaner came, so two hours of looking busy company. End result, one tidy house; I'm not really complaining. Start thinking about what I need to bring to Guides tonight, but then our babysitter cancels due to bad roads in her village.

Some phone calls, some emails, some general adminny housekeeping type stuff and then all too soon time to collect Little Fish. Slither to school to collect her 15 minutes before the end of the school day; the only way I can guarantee being home in time to beat Mog's bus. And slither home again to see Courtney Courtney waiting in her car. Hurrah!

But then...I turn the corner into our drive and discover Mog waiting on the doorstep with a rather cold escort, and a bus full of cold children waiting at the bottom of the drive. Apparently school was out early. For future reference, it would be helpful to know this kind of information in advance; I'm sure both Mog and the other pupils would have been warmer waiting in school until their usual home time instead of sitting outside our house. And it does somewhat undermine the whole point of Mog being last onto the bus and first off; the idea is to minimise the time she is in the hands of staff who aren't trained in her emergency needs.

Anyway, she's fine, the bus leaves, and we go inside and warm up. Little Fish pleads for a ham sandwich, the cats beg to be fed, Courtney and I have a cup of coffee and both girls are delighted to see her. Or are until I get the camera out. Mog very happy to see C, lots of shouting and kicking, but sadly lots of twitching and jerking as well; definitely fittier than I've seen her over the past few weeks. Hmmm.

A now annual tradition; we order pizza and enjoy it. Continuing the tradition, Little Fish and C then both sit in the bathroom with trousers on their heads, but I'm banned from sharing those pictures. Our extra carer arrives to get Mog ready for bed, and now I'm really relaxed. A friend visiting, one who can keep both girls entertained during the witching hours between school and bed, and then extra help at bedtime on top, this is real luxury.

Our carer says goodnight and heads off. C gets wrapped up and ready to leave, but then.... then our carer returns; her car having somehow wedged itself on the ice and being now totally immobile in its spot next to mine. Have I a spade?

A quick search of the garage in the dark (note to self: locate torch) reveals no space but a fork. We try forking the ice from her wheels, but then she gets worried about the prospect of punctures. So I beg a spade from our neighbours, and we shovel a pathway for the tyres. I'm so thankful for our carers; they save me so much energy by doing the physical stuff to give me a break...
The car moves one foot, two foot, then slides back down again. I push but then I lose my grip. A man passes by, stopping to ask if we are ok. Carer informs him she is stuck, he says "bad luck", and moves on. I come back into the house so C can get off home. Carer phones the RAC. The RAC promise to come out within half an hour. Being used to our own rescue company, who promise half an hour and turn up four hours later, I take this with a pinch of salt; carer and I joke about making up beds in the sitting room and I try to remember where I've put the lilo pump, just incase. And then the van turns up just twenty minutes after being called. Hurrah!
Furtive photos of the very nice man trying to rock carer's car out of the carpark; I only promised not to put it on YouTube or Facebook, so by posting it here I'm keeping to the letter of the agreement... No faces, anyway!

And now I should probably head outside again and check for success.

Sunday 10 January 2010


We left the house today. We went to church; the girls went off to Godzone, where I'm told Mog slept peacefully and Little Fish may have done some colouring in.

Then we came home where Mog continued to sleep peacefully, and Little Fish had a major meltdown. And then my stomach decided it didn't like living off Christmas Chocolates and gave me a funny few hours; I went to bed, and Little Fish came beetling up in her little chair saying "Don't worry, Mummy, we will look after you." Very sweet. For about 20 minutes at which point she decided she didn't like the responsibility and insisted I had to be better now, incase Mog choked. So I took over the settee instead. And Mog did not choke.

And then I checked the answerphone messages from the past week (oops) and discovered that we have extra carers booked in just about every evening next week (hurrah!), and that one cat is due a booster injection (boo). Swapped texts with friends, watched Little Fish slowly dismantle the sitting room, failed to prevent the cats polishing off the rest of our savoury mince, tossed Little Fish into bed and opened the door to Mog's carer.

Came here, sat down, typed this, and realised I haven't yet emptied Little Fish's commode, which is sitting in the bathroom, scenting Mog's shower nicely. So, leaving you all with the fascinating minutiae of our day, I'll go and empty it now.

Aren't you glad I blogged tonight?

Saturday 9 January 2010

Somewhat random ramblings

Looking through our cupboards and freezers, and adding in the supplies my parents kindly fetched for us today, I think I can now confidently state I could feed the girls and I for six weeks without shopping again, although we'd probably be tired of lentils towards the end of that time. The cats however would start going hungry at the end of a fortnight. It is ridiculous how much they can eat.

If our gas were to go for some reason, we've enough electrical heaters and other bits and pieces we'd be inconvenienced rather than cold.

If our electric were to go, we've eight hours (the battery life of Little Fish's Nippy). Which got me wondering, what happens if we do get a prolonged powercut? A friend having had the better (worse?) part of a week without gas or electricity just before Christmas. Going into hospital seems excessive, and I can't imagine the hospital would be overenamoured with the idea either. Ought I to be hunting for a generator?

Seige mentality. Crazy really; we live on a fairly densely populated estate, four families in this building alone at at least 20 neighbours within shouting distance. But not having set foot outside since Tuesday apart from to photograph the snowblob and rescue the kittens is making this flat feel further and further away from civilisation.

We get visitors; they appear on our doorstep and stamp snow from their feet, shake ice from their trouser legs and take the chair beside the fire, despite the fire being a) gas and b) off. They bring tales of having to dodge people skiing down the street, cats clinging to roof-racks, empty shelves in supermarkets. And inside, we plod on, Little Fish plays with her dolls and her pens, Mog supervises us all, and the cats eat the hyacinths, having decimated the poinsettia.

In praise of our care agency; the manager phoned up earlier this week to check we were alright, most of our carers having cancelled due to transport difficulties. I said we were, and I understood the problems they were having, but wondered if it might be possible to squeeze in some extra visits once we rediscovered our more habitual green and pleasant land. I wasn't expecting anything to be possible, so last night's visit was more than welcome. Doubly welcome was the card she brought with her from a friend; presumably the visit she'd made before coming to us! It almost makes up for the fact tomorrow's visits have been cancelled because the carer who should be coming doesn't feel comfortable driving in snowy conditions as her car is higher up than most people's cars. Why is it higher up? Because it's a 4x4...

Conversation from Little Fish yesterday.

Mumma, can I have a hand band?
A hair band?
Yes, a hand band.
Hair. band.
Hair. Bend?
No, Hair, hair, hair band.
Hair. Band?
That's right, well done!
So, can I have a hand band then please?

I realised today that Mog has managed three days in school out of the last five weeks. Setting aside the week in hospital, she's been very seizure-free during this time. Certainly for the last 2/3 weeks, she's had her inevitable big seizures first thing every morning, but after that, it's been limited to eyeflickering and the odd isolated jerk. And yet, flicking back through her school communication book, she's had prolonged seizure runs most days at school.

So what's the difference? It is quieter at home, but with three rampaging cats and a four year old, it's a long way from being totally silent. Are we less stimulating? Is boredom a better way of keeping the seizures at bay? Or does watching High School Musical (all three on a seemingly neverending loop) provide some kind of dampener to epileptic activity? It has a depressing effect on my own cerebral cortex, certainly. Or is there something else in the school environment causing an increase in the seizures? Flourescent lighting? The acoustics? The whiteboard? Not much I can investigate whilst we're homebound anyway, and not looking to keep her homebound forever; she enjoys being at school when she's well. But I'm sure she'd fit in more if we could reduce the fitting.

More snow predicted for next week; one of the girls' schools has a note out suggesting parents might like to go in tomorrow afternoon and shovel the entrance so it can open on Monday. Considering it's supposed to be snowing most of tomorrow night, I'm not entirely certain this will achieve very much other than burning off some of the Christmas chocolate calories. And considering the road leading up to the school hasn't been gritted and is reasonably lethal, I'm not convinced getting there to shovel would be entirely sensible either. I shan't be volunteering. I shall instead curl up on the settee, enjoy the view, and enjoy the Little House books (always best read when warm and cosy with a cold view) whilst attempting to be deaf to pleas of "Mumma my baby needs a pink jarma acos he is cold". I'm told it's benign neglect and will lead to greater independence in future life. Unfortunately, thus far, it seems to lead not to a child able to find other ways of entertaining herself but perforated eardrums as requests become demands become tantrums.

We may or may not have a carer tomorrow; if she can get her car out of the drive she's going to try to get here. We may or may not make it to church tomorrow; if our carer comes we stand a reasonable chance of being ready on time. But then we might actually have to leave the house. I'm getting used to this hibernation.

And now I need to make the most of it, and snuggle into my lovely goosedown duvet, and imagine that I can hear the wind wuthering, whereas in fact the noises are gently snoring children and a boiler chug chug click clunk whirring away to keep the place toasty warm. Better in than out, as my Grannie never used to say.


*picture from

Thursday 7 January 2010

Snowflakes keep falling on my shed...

"I not eating that acos I am sick"
"No you're not"
"Yes, I sick, I not at school and I am sick"
"No, you're not at school because school is closed because there's too much snow. Now eat your lunch"

Why didn't I listen?
One cleanup later, one small sad floppy girl. Several further cleanups later, one small sad tired floppy and cross girl.

You've heard the expression "Running about like a headless chicken?" I'd like to add a new one: "Sleeping like a headless cat" Little Fish cheered up at the prospect of doing her school homework. School being closed for the last couple of days, the head has issued a challenge to all the pupils - build a snowman, take a photo, email it. Grannie and Grandad were summonsed to helpAnd Little Fish decided it was too cold to do anything active, so sat in a sleeping bag in her sister's buggy and directed operations. Grandad was unimpressed with the quality of the snow. Despite being the deepest we've had here for many years, it was too dry and powdery to be packed into upstanding snowman shapes. So we settled for Snowman Blob instead. I like it! Hope Kitty and the Mancub approve.

Oh, and Gotcha would like you to know he hasn't really lost his head.Excuse the boxes; schools are closed, the milkman and carers and postmen and binmen are all absent, but our chemist still managed to deliver on time. Three boxes, three bags, and I still forgot to order some of the stuff we needed. Ah well.

Meanwhile, anyone seen a stork?


Wednesday 6 January 2010

Our turn

Pathetic compared to other parts of the country, but still enough to close the girls' schools, cancel our carers, lose our milkman and delay our drugs delivery.

That's not really a complaint; it's pretty and I love looking out at it. So do the cats. All three of them decided six o'clock this morning was the perfect time to go and explore it (that'll teach me to open the door to get a closer look). Goway very sensibly dashed out, dashed back in and made full use of the litter tray. The other two bounced out, got wildly bogged down in it (Norwegian Forests not, apparently, being terribly full of snow. Strange; I'd've thought it would be a reasonably common occurence), panicked mightily, and then cowered down together behind our green bin. And cried. So if you're a neighbour, and you saw me outside at silly o'clock in a spotty dressing gown and unzipped boots, clutching a furry waily thing under each arm, now you know why. I blame the neighbour with the cockerel myself; he crows so loudly all three cats hear it through the double glazing (as do the rest of us), and this sends them wild to try to catch and kill. If the cockerel's still here this summer, and crows again at 4AM I might just be fairly wild to let them do it too.

So, despite a stupidly late night courtesy of one child and an insultingly late morning care of the other one, I had many fresh and inspiring plans to go out and make the most of the snow. And then more snow fell, and I realised that walking down our ramp was difficult enough, and any kind of wheeling would be a total impossibility. So plans to meet the school's challenge, make a snowman and email it to the head teacher were shelved in favour of reliving another of my childhood memories, and making a tent in the sitting room.

Mog was in favour of this; her task was simply to lie back in a comfy armchair and anchor the tablecloth. Little Fish was very in favour of this, and used the tent as cover to empty the book shelves, divest her doll of all its clothes, hair, and facial features, and munch her way through chocolate biscuits. I was in favour of this; LF was at least voluntarily limiting her sphere of destruction, and I could reheat lovingly prepare a vat of broccoli and stilton soup for lunch.

I think that moment was probably the high spot of the day and I should probably consign the rest of it into oblivion. I don't want to remember the soup rage, the mustard powder incident, the chaos three housebound cats can cause with two buckets of litter, the projectile vomiting into my hair, the Movicol induced brown dripping all over what bits of floor weren't already covered with cat litter or mustard powder, the long, long hours til bedtime and the further cancelled visits and appointments.

Nope, busy repressing all that. I'll stick with the fact that snow in moonlight is hauntingly beautiful, we don't actually have to go out at all and we do have lots of yummy food to eat, new toys to play with, new DVDs to watch.

And now I think I should remove the 3/4s of a banana I've just spotted sitting on top of a stack of DVDs, go and catproof the remains of the reduced mustard macaroni cheese, and spy on two sleeping girls. Now that's a beautiful sight I get to see every single day and never get tired of watching.


Tuesday 5 January 2010


It's amazing what a week in a cattery will do for feline friendships. Grolly and Gotcha are forever entwined, but this is the first time Goway has joined them. Long may it last!


Monday 4 January 2010

Cold Front in the Kitchen

The front of our house (sitting room, bedrooms, kitchen and bathroom) is beautifully centrally heated to a nice steady spastic muscle relaxing 21 degrees centigrade. The back of our house (playroom, sunroom, cloakroom), due to complex planning laws and cheap building contracts, is unheated. We have an electric radiator and big wide sunny windows, and most of the time, it's liveable in, sometimes downright cosy.

This isn't usually a problem. If we're using the rooms we turn the radiator on, if we aren't, we don't, and I put a sweater on before I dash through to the freezer/dryer/mountain of clothes which really will get put away one day. There is the added complication of our cat hole - in many households this would be a well regulated cat flap; in ours it is a cat flap shaped hole in the kitchen door, created by the previous residents and never really dealt with by yours truly. It's blocked off at the moment with a table top, a cool box, and a sack of mushroom compost (yes, mine is a classy kitchen, why do you ask?), but when the wind is in just the right direction, an icy draught rushes through at ankle height.

The trouble comes when the coolness of the playroom combines with this icy draught, and meets the steam from the washing machine and the dry heat from the oven. No gradual cooling off as you walk through the house; take two steps past the washing machine and you enter an entirely new climate. I wouldn't be surprised to see rain showers, whipped into little mini tornadoes by the ankle cutting wind. Pretty, but not terribly practical.

Drastic action was obviously required, and I'm not ashamed to admit I took it. The cat hole is a hole no longer; it turns out the garlic bread box from our last dominos pizza was just the right shape to stuff it. I'm sure Ideal Homes will be calling to run a feature on us any decade now.


Sunday 3 January 2010

This morning's dilemma

In addition to, or conceivably caused by, the mind fog which accompanies an earlier start by far with a worrying lack of caffeine, on top of the worries about how to pack an entire flat into our minibus, I am faced with this:

On the way here it was simple; a new circuit and a new bottle, no leakage. This morning I have a half full bottle of water plus a very full humidifier. I can't throw the circuitry until we get home; I need the old pipes to show me how to sort the new ones. So it's got to be packed, but hmmm how? They don't cone with handy corks for transport. Perhaps from now on we need to take even numbers of nights away only?


Saturday 2 January 2010

Frost on palm trees

This would have been a frostier photo but I drew the line at standing on ice in bare feet and pink pyjamas. There's definitely something unsettling about frosty palm trees though. Like rain in the desert, or sun for August bank holiday, it just feels wrong somehow.

The last day of our holidays today. Possibilities for pootling around the island, walking along a beach, meeting friends for lunch. And instead a day spent mostly horizontal, doing as little as possible. Repacking our belongings, wiping our traces from the flat and returning it to the anonymity of the holiday let. And then repacking our belongings, following Little Fish around in a futile effort to contain her, before giving up and settling for snuggled on the settee.

Mog not quite so hot today; a kinked feed pump possibly contributing to that, but a girl very definitely ready for her own bed again. Both girls sleeping in shifts it seems; last night one woke just as the other dropped off, and they seem to be repeating the cycle tonight. One unsettled simply by the change of bed, the other more by the fear I might disappear. Sympathetic friends, understanding my absence and delivering homemade Baileys icecream as compensation. However unsettled, the girls get no share in that!

And now they really do need to sleep. Somehow we need to be out of here by 10am; this evening's packing may have helped, but finishing the coffee this afternoon was definitely a mistake. Fun times ahead.

Friday 1 January 2010

Start as you mean to go on.

A slowish morning, not slow enough considering the lateness of the night before, but no tantrums over the toast, always a good start. Just time for one viewing of just one of the High School Movies before all of us off and out to lunch with our holiday friends. 37 of us, 8 in wheelchairs as well as a handful of ambulant oddities, and we disappeared into a sideroom in the pub with nary a stare. Apart from the inevitable old woman who positioned herself at her table so as to get the best possible view of us all, and discontented herself by counting us all repeatedly with pursed lips. I think there's some kind of law about every pub having one old woman placed to do this. Still, a fair few of us outstared her, and a good meal was had by all.

Home, where a puddingless Little Fish begged for a bowl of custard, made it last until teatime and then settled for two slices of ham before pleading for an early night. Early night duly granted; three hours on she's still awake and complaining alternately that she's tired and that she wants to wake up. That bit's definitely not the greatest start to the new year, but hopefully just a hiccup after last night. Lying in bed, her Nippy taking over the hard work of breathing, she has the energy to wear the rest of herself out registering a subdued but prolonged protest. Having pleaded to sleep elsewhere as Mog's hypothetical noises would keep her awake, she then moved to protesting she couldn't possibly sleep alone. Mog installed in her bed, she then grumbled about the fact Mog might keep her awake, before needing to turn over, swap sleeves (to suck), have a sip of water, tweak her mask, move her legs, check if I was in my pyjamas yet, double check it really wasn't morning, before finally, I hope, settling into some kind of a sleep. Sometimes I think the wrong child gets the sedative.

Still, somewhat later than planned, the girls do seem to be settled. Another gathering next door; I may show my face just to be sociable, but I think I need to take LF's advice, swap my jeans for pjs and snuggle down into what may not be the soft cosy comfort of my own blissful bed, but something which is at least clean, horizontal, and warm.

I could lose the hour long screaming session we had over the necessity for intermittent catheterisation earlier today, and I could lose the rattle Mog seems to be growing in the back of her throat again. But the rest of the day, I could live with this being the pattern for the year ahead.


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