Insert suitably witty title here when less tired.

I had a certain feeling about today when it started, not in a peaceful and gentle realisation that the night was over and the morning was here, nor yet in the summons from a needy child, but by the insistent sound of one (possibly two) cats sharpening their claws on my headboard; a technique they have perfected in recent days and one guaranteed to have me sitting up before I've opened my eyes.

Miss Mog is now halfway through a course of flucloxacillin, following on immediately from a week of amoxycillin, which follows swiftly on from a batch of co-amoxiclav, all of which is being washed down by her regular azithromycin. I think she may be sterile. Certainly, there's no hint of green anywhere near her copious secretions, the large pink throbbing circle surrounding her gastrostomy has shrunk significantly and is showing signs of returning to normal. Her bowels are possibly the sprightliest they've been in a good long while, and any vaguely hormonal spots appear to have packed up and headed south for the winter.

Two days dairy free have done a lot to improve her antibiotic discomfort though; so it was a shock to discover her silently screaming under her mask this morning. A scream which became significantly less silent when we removed the mask, but resolved itself fairly soon. She wasn't interested in explaining, so I settled for being happy that it wasn't an issue any more.

Meanwhile the Little Princess woke up in an "I"m not going to church so you can't either, HAH" mood. Resisting the urge to retort with "Well I'm going and you're too young to stay home alone so you have to come with me HAH DOUBLE HAH" (although I'll admit the temptation was almost overwhelming), I settled for a reasonably rational "Never mind, I'm sure you'll enjoy it when we get there." I do occasionally get to play the adult. It's rare enough that I feel I should record it when it happens.

Not the most auspicious starts to the day though. I did however manage a very nice warm shower all by myself and reasonably early on, meaning that I was for once fully dressed and very nearly polished (or as polished as I get) before our carer turned up. Shame about the kitchen, but then the cats had had great fun with the two-years-out-of-date coley fillets I'd found and ejected from the back of the freezer last night. At least they weren't totally wasted; the cats really had had quite a lot of fun punting them around the floor most of the night.

Still, clean clothes, clean hair, straight parting; it doesn't come much better than that around here. A shame then, that an explosive bowel incident (not my own!) coated not just three walls of the bathroom but also hit rather closer to home.

OK, cleaned up, two girls somehow dressed and polished, neither coughing or showing any signs of illness - bowels being more disability related than anything new and interesting. One ham sandwich cut into heart shapes (how did this get started), one tasty home-made-almond-milk* based smoothie smushed rather more hastily than usual, one carer harried out of the house, and we were in fact off to church in decent time. Albeit with a reasonably large trail of devastation ranging throughout the house.

To church then, and Miss Mog opted to stay with the adults rather than heading for the mayhem Godzone children's stuff. And behaved very nicely, and enjoyed the worship, and I don't think people objected too strongly to her delayed joining in. She voiced her enthusiasm for the sermon quite thoroughly, and then decided to drown nicely towards the end, forcing us to leave to calm things down a little and to enable the rest of the congregation to hear at least some of what was being said.

Little Miss Innocent all through coffee; "Who me? I wouldn't make a sound", and then home where a nicely bland and dairy free chicken casserole was waiting to be blended for Mog and flavoured up a little for the rest of us. An equally bland and kind on the stomach fish pie also blended, music CDs burnt for staff who can't work an iPod, a bag packed, (and if it takes me three hours per bag for Florida then I should have started last week, oops) and equipment gathered together for a trip to respite, and we were just about out of the door after a reasonably hurried lunch.

Into the bus, and once again Mog demonstrated why exactly we really need our new bus with her spot up at the front next to me. It's never good to be driving down the dual carriage way, to hear  large cough and silence, and to have a small child say "Mummy, Mog's upside down in her chair." Coughing her way off the seat and down the side of the chair is really not a great new talent. And a three point harness doesn't stop it - roll on new chair as well as new bus. Now please. 

Back to Mog's second home - we missed a few nights for various reasons, so she's had extra respite this month; I miss her but two lie-ins a week has been really rather lovely. A quick run-through all her new meds and protocols (you wouldn't believe what's changed just since Thursday), a check of email address to email a copy of her talking book, as our very nice printed one seems to have gone AWOL - rewards may be offered for its swift return - a discussion about feeding and everything else under the sun and finally tLP and I were back in the bus and ready for home.

Detouring past various petrol stations in the vain hope one of them might have diesel at a cost not requiring a second mortgage (for my US readers; the cheapest I can find is $10.40/gallon), successfully avoiding McDonalds, tLP and I arrived home with only a camping saucepan full of wee (she's developing an obsession with self cathing in the car; I'm all for independence but I think she's taking it a little far) to commemorate our trip.

A request was made for chocolate Brownies. Not wishing to sabotage my last ditch plans for a week of healthy eating before we hit Florida (with all its Funnel Cakes and Blueberry Bagels and other yummy stuffs), I was rather pleased to find a recipe for just two Brownies. Found one which claims to make just one 95calorie Brownie too, but oh dear, I had no yoghurt, and so had to go for the double version instead. We mixed, we poured, we licked the bowl and baked the Brownie. We actually had a whole five minutes without any kind of frustration on either side. It was good. Chocolate is good.

And then we returned to the battle of wills over drinking, over how we don't throw things on the floor because then we run over them and they break, how we don't ever EVER pour water over iPads and computer keyboards, and how STOP means cease and desist immediately, not just when it happens to suit you, and how spitting is Never Allowed, and how bedtime really is going to be very soon and how tiredness is Not An Excuse, and on and on until I was tired of the sound of my own voice and certainly tired of the sound of "well I'm sorry, but...", and thankfully the Brownie was baked, or nearly, and so we split it in two and poured it out onto plates, and nibbled together. Food, the great healer. And we had switched the cocoa with drinking chocolate, since cocoa had we none, and tLP the gourmet tasted hers and declared it officially too sweet to be a proper Brownie (and she was right). I have great hopes for her cooking ability.

Our evening carer appeared and persuaded tLP into a bath. And tLP shouted long and loud about the wrong way to wash her hair, and the wrong way to wash her bowel and spoon, and the wrong way to be hoisted, and the wrong order to get into bed, and I considered trying on her ear muffs but settled for a baked potato and some pumpkin and cashew nut soup, and decided I'm unlikely to lose 2 stone in the next three days, so I may as well enjoy eating all the good things we have around us. And there are many such good things all around us at the moment.

And still she shouted on, and meanwhile I attempted to email respite a copy of Mog's talking book. And one hour after I first began the attempt, I think the sixth version of the email address has finally gone through without, so far, being rejected. A missing r, a missing ., a rogue k, a missing r and a rogue btconnect; a frozen mail server, a forced computer shutdown, and finally I think I have just about managed to send three attachments to the same place, where I hope they will be able to assemble them in something vaguely approaching the correct order, and Mog will have a voice again. And then of course the pink file will turn up again. Or at least it had better.

Meanwhile, tLP, wrestled into bed, suddenly morphed into the most charming and caring child on the planet. And begged please for a nice Bible Story and now won't you ask me questions about it to help me understand it and now I just want to check these little bits and HEY NO I'm not tired at all (but oh boy, I am!). And so we Snuggledy-Buggeldy-Ruggedly'd her up tight with Tummy Pig and Special Blanket, and she asked me very politely to close the bedroom door, and I did, and there was silence.

Until suddenly there wasn't, because Stealth Cat had decided to disguise herself as a pair of school trousers and so had been left behind in the bedroom, ready to leap at the first sign of a sleeping child.

Cat extracted, we said goodnight again as Mummy and daughter, and as friends, and if not letting the sun go down on your anger isn't quite as good as not letting yourself get that angry in the first place, it does I think come a close second.

And now she's asleep and the cats are asleep, and the kitchen no longer reeks of fish, but I've just remembered the load of ashing which has now been in the machine for 36 hours, so I had better go and extract it on the way to my own superbly comfy bed.

Tia

*brag alert

InCONtinence

Picture this. I'll spare you the graphics.

A fairly ordinary kind of a day. A child who just happens to be doubly incontinent wakes up. She went to bed at 8PM, later than usual, and slept the night through without waking at 5AM, when she has her morning medication. So, by 9AM, the urine sitting in her incontinence pad was fairly ripe.

Her pad was changed, and she was hooked up to her tube feed, which runs for the next twelve hours, dripping a diluted, easily digested, formula into her stomach at a rate of 140mls/hour.

At 10AM, after much discomfort, she had a fairly large, fairly loose bowel movement. Her pad was changed, and she opted to go back to sleep for an hour or so. By 12PM her clean pad was flooded with urine, her pad was changed, and it was time to go out for lunch.

Once sitting up in her wheelchair, gravity and movicol did their stuff, and by 3PM her pad was distinctly overripe. The pad held it all in, but once unsealed, a wave of liquid faeces flowed over the child, necessitating a shower. A quick hose down, much mopping with a towel. Clean pad left in bedroom, and whilst this was fetched, a good wee ensured the towel also needed washing.

All cleaned and changed, back in wheelchair ready for an afternoon party. A good party, a good evening, home, and one flooded pad needing to be changed before bed at 7PM.

One child now sleeping peacefully, one feed pump nearly finished, a good end to the day. 5 pads used plus one sodden towel, which would have been a 6th pad if a certain parent carer had been more organised. An ordinary day, no antibiotics to produce extra bowel movements, no extra fluid intake, no pad accidentally ripped as it comes out of the bag, and no middle of the night or 5AM change.


Now take another child, who is differently incontinent. Imagine having a normal diet, but having no control over when your body evacuates stool. The medics do their best, providing various different devices and procedures to ensure a good evacuation once a day, and this is reliable 13 days out of 14. But then on the 14th day, imagine seeping and leaking at intervals throughout the day. This can be six times within the six hours of a school day, it can be six times within one hour.

Imagine, at the same time, having a bladder which never fully empties, but which dribbles constantly. Imagine taking medication to control this, on top of the medication to try to control the bowel problems, and imagine trying to deal with both these issues within a mainstream school environment. Imagine having to decide - or others having to decide, on your behalf, which surgeries may or may not improve things. And in the meantime, imagine that every two hours (or more often, on the days when the bowel is playing up), you have to stop whatever you're doing, whether that's sitting in a lesson or playing at a party, and submit to someone else inserting a catheter and emptying your bladder.

Remember, even with this happening every two hours, your bladder tends to leak. So you need to wear a pad inside your knickers, to catch the dribble and prevent embarrassment.


Now imagine that you're the parent. And imagine that you've had a phone call from the continence service. It has been decided that, from now on, no child will be issued with more than four pads per day. Never mind the fact that one child has been assessed as needing five pads, and the other six. Never mind the fact that the needs have not changed, from now on, a maximum of four pads per day will be issued.

Which of the first child's pad changes will you decide to skip? Do you leave the child in the ammoniacal overnight pad, because although it is distinctly whiffy, it isn't actually fully soaked? Do you leave the child in the soiled pad, because the child has not had that morning wee yet?

How about the second child? Do you tell them that from now on, they can no longer use a smaller pad inside their knickers, and instead must go back into nappies, because these will hold more dribble, so will not leak through if left unchanged between caths, despite being damp? What does that do for self-esteem?

Ladies, imagine not being able to change a sanitary towel because each one should last six hours. Or perhaps imagine not being able to throw away a tissue, because although you have blown your nose on it, there's a corner which is still free from snot and which you should use next time.

Oh, and then, whilst you're still trying to work out how it is OK to decide not to meet an assessed need any more, imagine that the new system will mean these pads will be delivered. Good news, perhaps; it's certainly a pain having to go to the health centre every month to collect them. Well yes, that would be good news. Except that under the new system, you'll be expected to make a phone call every twelve weeks to reorder the pads which will not be enough to last those twelve weeks. And then, oh and then, you'll have to find storage space for three months' worth of incontinence pads. Two children - that means the equivalent of six months' worth of incontinence pads - adult-sized nappies. 14 pads to a bag, 4 per day = 28 per week = 24 bags per child every delivery. 48 bags of pads. Plus the extra bags we'll now have to buy privately. And the extra extra bags we will have to buy to cover the times I miss the cut off date to reorder, because life tends to get in the way of remembering to make a phone call every twelve weeks.
Now imagine someone has phoned to tell you all this at exactly the same time as the school bus has delivered two girls to the doorstep. And imagine being told "I don't like your tone, you're very hostile." when you ask who made this decision and how exactly they expect you to a) manage without the pads they know you need and b) where you're supposed to store them.

Imagine all that, and imagine that several days later you're still waiting for the post to deliver the promised full details of when this is going to happen, who decided it was going to happen (since apparently the continence service have had nothing to do with this decision), and the information on who to complain to and how. Imagine that, and imagine scrubbing the faeces from your fingernails after cleaning a commode this evening. And then you'll be pretty much where I am at the moment.

Tia

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?

Tia

*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.

Good News, Bad News...

The good news is, Mog's CT scan was today.
The bad news is, the hospital forgot to tell us.

More bad news; the van failed its MOT yesterday.
More good news; only on brake pads and the garage will fix them tomorrow.

Little Fish is having driving lessons this week. There's a worrying concept. Whizz Kidz are running a three day course for wheelchair users, and she's getting to join in. Getting there with her various chairs and Mog is interesting without our van.

We called a taxi this morning; just as it arrived the phone rang. A neurologist wishing to discuss sedation for the CT scan we didn't know Mog was having. Frustrating. But, more good news, they can rearrange it for next week, and have found a day when our only other appointment is at 9.20. So now all I need to do is find a way of keeping Little Fish entertained whilst we photograph the inside of Mog's head.

One hugely tiring day. Lots of concentrating for Little Fish, lots of waiting around and cheering loudly for Mog and myself. New friends, always nice. And old acquaintances; bittersweet as I had to break the news of Goldie's death to one of her old classmates.Huge giggles for Mog who chose the most inappropriate time possible to create a noxious code brown cloud; not the time to discover I'd forgotten the wet wipes. And who on earth puts just one changing bench into a building designed for people with physical disabilities, and who then puts that changing bench into a giant room without a loo or sink?

Home via taxi again, making the decision to leave Little Fish's powerchair there overnight. Rethinking that decision when the taxi was forty minutes late; my arms may never recover from the wait.

One small child very tired, one medium child equally tired; two girls into bed and then a builder here to come and look at finishing the many many jobs our other various builders have not completed.

A Little Fish-ism - "Mummy, I wear my shrink wrap tonight?" Shrink wrap? Shrink wrap? Ah yes; chin strap!

Tia

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.
Tia

A less than stellar start

Some interesting assistance from Little Fish; funny but distracting. One pump charger forgotten and returned home to collect. Frustrating, but also a sense of relief that we had only gone half a mile.

One ferry just missed and a 90 minute wait for the next.

One Mog, still full of giggles, but also turned into a one woman poo factory. Apparently ferry travel is the ultimate constipation cure; it shook out several days' worth.

One arrival at the very nice holiday apartment to discover "laundry facilities" which are not quite the same as a washing machine in the kitchen. Two very tired and smelly girls. One foully despoiled wheelchair. And the ever pleasing discovery that spare covers are still at home. As is the phone charger, meaning this update will be very brief as my phone is also my clock overnight.

Still; we got here safely as did our friends, and we'll join them tomorrow - too tired tonight
Tia

Is it bedtime yet?

Yesterday morning, I dropped our van off at a bodyshop to have a paint job. It all worked brilliantly; Mum came here to sit with the girls, Dad picked me up from the garage and dropped me back home. Mum and Dad were both at work in good time, the girls were happy to see Grannie albeit briefly, and I had the hope of a car without scratch marks and a dented rear door.

A peaceful day yesterday - sick children needing lots of cuddles, and plenty of time to sit and do just that.

This morning I woke up and realised Little Fish had an appointment at our orthopaedic hospital. What's wrong with this picture?

(hint - two children off school, and no van).

Ever resourceful, I called our local reliable taxi service. They have no wheelchair accessible taxi available at the time we really need, but can provide one 15 minutes later; we should just squeak in on time as no need to worry about parking. Our carer turns up late, the taxi turns up early, and somehow we all tumble out of the house and land more or less the right way up and definitely heading in the right direction.

We arrive at the hospital 15 minutes early for our appointment. I cast a brief glance at the cafe, but decide to be good and head on in, thinking we'll have time for breakfast after X-ray.

We get sent from reception to X-ray, we arrive in X-ray to find the world's fullest waiting room. Two rooms overflowing, and some very harried looking receptionists. And so we find a corner and sit. And sit. And sit. And watch as the waiting room empties and refills. We find three of Mog's schoolmates, all of whom arrive after us and get seen before us. Mog decides the waiting room is overcrowded and overheated, and decides to start fitting. 1 hour into our wait, 25 minutes into Mog's seizure run, 45 minutes after our appointment time, I decide to go and check we have been booked in correctly. We have - but apparently there was a problem with the sticky label on the X-ray request so we have been delayed longer than everyone else. I get a bit wobbly about the unfairness of this, and wobblier still when the senior radiographer (radiologist?) attempts to move us out of the corridor and back into the overcrowded festering pit waiting area. Picking up on my distress, she somehow manages to sort things and we are suddenly standing inside the X-ray area no longer waiting.

One member of staff volunteers to sit with Mog in the waiting room, changing her mind when she watches Mog stop breathing, and deciding instead that Mog will indeed be fine behind the big screen with the other staff. And Little Fish is stripped ready for her X-rays. I offer her legs, they request her spine. I am confused, check my diary and realise I haven't written down which clinic she is attending, so assume it is spine and not hips.

1 hour and 20 minutes after our appointment time, we make it back to outpatient's, where I see that there are no spinal doctors in clinic today, and so we must be seeing our hip man instead. I debate double checking the X-ray but the thought of another 90 minutes' delay is somehow less than appealing.

We sit, we wait, we sit. And then the magic moment; Little Fish's name is called. A new chap; I steel myself for the inevitable medical history questions, gather our bits together, and follow him through to the consulting rooms. And find myself at a loss; he has vanished. Eventually we locate him; for some reason he didn't wait for us but just went straight back to his little room. And when I say little, I mean so small that there was no way of closing the door once Mog's wheelchair (with Mog in it) was inside the room. I realise space is at a premium, but given the fact that this is an orthopaedic hospital, where, presumably, a largish number of people with physical disabilities may be patients, it shows a certain lack of forethought (nb - this is a new building).

Anyway, our doctor says hello, checks which child is his patient, and clicks onto the computer to find the X-ray pictures. 10 minutes later, he summons a nurse in, who manages to log him into the system. He then fails to find Little Fish's notes - apparently she doesn't exist. Since the file with her notes in is still marked prominently with her birth name, and since there was a sticky label error earlier in the day, I'm not overly surprised. When I see that he has put her date of birth down as the 18th of August this year, I'm even less surprised.

We discuss the x-rays as we wait for the computer to load. I explain we are not here about her spine; he insists we are. I point out she has a spinal consultant and that this is a post-op follow up on her hips. He reads the notes again and agrees this is the fact, and then apologises for ordering the wrong x-rays.

The doctor shuffles out of the consulting room - a manouvre which involves me folding my legs up under me, Mog resting one arm on the clinical waste bin, and Little Fish being stepped over. He finds another computer, locates the files, and looks at the x-rays. And returns.

Apparently the metalwork is all in the right place.

This is good. The doctor then attempts to discharge us; I ask about the remainder of the appointment, the debate about her feet, the appointment with orthotics. He asks to look at Little Fish. Always a good start - shame it's taken about half an hour to get there. And then decides, once she is stripped and on the bench, that LF is "too complex" for him, so shuffles out again to find the consultant.

We spend the next twenty minutes with Little Fish in her underwear, in a room with a door we cannot close. The registrar lurks in the corridor, waving nervously at consultants as they breeze past with varioius patients. I hear LF's medical history repeated several times as he asks passing doctors for advice. He pops back in, squeezes past us all, asks about LF's eating and drinking. I say she eats fine and has a gastrostomy for flouids. He apologises, and disappears again.

Finally the consultant walks in. He glances at LF's feet and says no op yet. This is good news. I ask about an orthotics appointment. He says there is a clinic today; I ask for an appointment at some point in the future, but am persuaded to attend this one.

And so, three hours after our 10AM appointment, we cross over the road to the orthotics clinic. Where, despite being ridiculously busy, we are taken back immediately. We sit in one room, the orthotist examines LF's feet, and decides to recast her splints. Good. We are shuffled through to a room without a carpet. The orthotist disappears. And reappears to apologise for forthcoming delay. We decide to return to the waiting room, where LF makes the most of the toys, and Mog coughs loud and long to the disgust and terror of the other patients. It isn't swine 'flu people, just Mog.

Finally we get to the plaster room proper. LF chooses a new design for her splints, and the orthotist begins his work. Mog wakes up at this point, and kicks him repeatedly until I mover her out of the way. She then decides to need suction instead. Little Fish watches and bosses us all around. Eventually she is cast, we clean her legs, replace her shoes, and head back across the road for a very belated lunch.

And then we go to call a taxi for the return journey. I ask at reception for a phone number, and am pointed around the corner to the freephone taxi phone. I pick up the phone, the man at the other end tells me I should have booked the accessible taxi and that they have no others, and hangs up. We head back to reception. I can see a Yellow Pages, and ask for it. A man waiting at reception hears what the taxi controller told us, and says he will "feed that back" before disappearing and looking important. Instead of handing over the Yellow Pages, the receptionist phones the original taxi company asking them for competitors' numbers. They claim to have a wheelchair taxi available right now. She books it in our name, we head outside to wait for it.

We wait. A very small taxi pulls up, looks us over, and runs away. Ten minutes later, a big beastie bus from the same company turns up. We load up, and finally arrive home six hours after we left it, 5 hours after our appointment, and 3 hours after the girls should have had their lunchtime meds.

Little Fish has managed the day really well; I phone her school to let them know she will beback in romorrow. Mog has had seizure after seizure after seizure; I decide she needs another day at home and do not call her school.And then LF has a very long and fierce meltdown, much screaming and sobbing and utter exhaustion. And Mog finds the sense of humour she's been missing over the past wee while hand has an eeevil laughing fit, throwing herself into the edge of her bed and laughing some more, kicking her cushions over and laughing even more.

And I leave you with my thought for the evening - which is worse; Amoxycillin poo in a pad or co-amoxiclav poo without a pad?

Tia

Worlds apart

There's a line from Buffy which a friend and I use from time to time - "Our lives are different than other people's". Granted; we're usually talking new and intriguing variations on dealing with poo or unforeseen complications from an overabundance of helpful professionals, rather than giant snake demons, multiple apocalypses and the ability to slay without breaking fingernails. But it's still shorthand for the fact that we're living in a world most of the people living in this world have no idea even exists.

Every so often, my world bursts in on someone else's, and their comfortable assumptions about life are blown apart. They realise, for example, that my child was just like theirs until there was an accident at birth; that not all disability is testable for in utero. Or they discover that the national health service does not in fact provide constant in-home nursing care for every child with a disability. Or that some children won't get better, no matter how marvellous medical advances might be. Hopefully we don't just blow a cosy world apart but also help open eyes to the beauty our world contains.

Sometimes though, it's the other way around - and it's my world which gets cracked. A conversation with someone fairly closely involved in Little Fish's daily life. Who, on discussion, proved not to know the difference between a catheter and a gastrostomy tube (for anyone reading who is similarly unaware, the catheter is for urine, it goes up the same tube most of us wee out of and drains the bladder. The gastrostomy is a little silicone tube which joins the stomach to the skin and lets us pour liquids directly into it). It's not simply that this person spends time with LF nearly every day, it's that I had forgotten these things are not part of most people's lives.

And the other night a friend rang here. And my first thought was that they were ringing to let me know another child had died - one of the five children I can think of right now who are critically ill in hospital or just about hanging on at home, although no one really quite knows how. And they weren't, they weren't phoning about anything serious at all. And I realised that probably, it wouldn't be most people's first thought whenever the phone rang.

I'm not sitting here waiting for a child to die. It's just that having children die is a part of this world I live in - and, thankfully, it probably isn't a part of everyone's world. I certainly hope it isn't anyway.



I had a daughter, and my daughter died. And if I harp on about it, well, know that she's nearly always on my mind. Not always in a world-shatteringly awful abyss of loss kind of a way, sometimes in a lighthearted oh, she'd have loved today kind of a way, and sometimes in a half-guilty, we'd never have been able to do that with her kind of a way. And before she died, I didn't understand the enormity of that loss. I've known other children who've died. I've known other, older, much-loved relatives who have died. But the utter jar, the time fracture when a parent loses a child; that, I hadn't known.

Time passes, as it has a tendency to do. Life moves on; it's tied to time that way. But death, death interrupts both life and time. And death causes time to eddy oddly about life - a phrase, a request, a something; and suddenly that deathlossgriefPAIN is back as urgent and demanding and piercing as it was when it happened, and as piercing as it was before it happened but when the realisation of its inevitability first hit.

And that probably doesn't make much sense. But I think I needed to say it. And having said it, I can step aside from it and bring myself back to the land of the living, where the poo from small incontinent children is still being added to by the piles of poo from smaller undertrained kittens; 4 loads of washing today and two bags of cushions and stuffed toys thrown out and one most precious knitted doll waiting for a Biotex bath in the hope she'll recover. Ground pepper under the furniture does indeed stop kittens pooing under the furniture, but, as the saying nearly goes, you can lead a kitten to litter, but you can't make it sh*t. This house stinks.

Tia

The phantom crapper strikes again

Oh the joys of kittens. I wouldn't actually mind quite so much if they'd actually come up and say hello occasionally. At any time other than 4AM I mean. But although Gotcha's getting pretty bold, Grolly just sticks her head around the door and meeps until I empty the litter tray. They've both found new hiding places; people got too interested in their bolthole behind the freezer so have found somehere a little quieter. I have no idea where.

Further joys; two freerange kittens means no catflap for Goway until further notice, so there are three possible contenders for post of phantom carpet-crapper. Carpet-crapper. With lino all over the house, why do they choose the only decent sheepskin rug as a nice alternative to the litter tray? Readers of a timid persuasion will not want to know what I found in the hood of my raincoat when I came to put it on before racing Little Fish to school on Thursday either.

I have resorted to bribery in my attempt to entice the little beasties out from wherever they are hiding. This is working quite well with Gotcha; he even rubbed himself up against me earlier today as well as indulging the girls in a prolonged round of fishing for kitties. Turning his nose up at the turkey slice, he did consent to eat a morsel of salmon from my knee, although only if I didn't look at him or move my hands in any way. But total silence from Grolly. Gotcha has started picking out his own armchair and informing the rest of us it's his. He's taken to rolling about in the sunlight, chasing his tail, and generally indulging in being an entertaining kitten, as long as none of us move in his direction. But Grolly has clearly found a hideyhole even more effective than the back of the freezer, and only comes out in the wee small hours.

They've been here a week now; and Little Fish has finished her first week of school (nice segue? A little laboured perhaps). She's made a friend; his name is Archie and she's been telling me all week how he shares the name of our friend's dog. Archie the boy seems to be more of a hit than Archie the dog; not only does she tell me how much she likes him, she actually tells him too andlets him hold her hand. There were tears on Friday when they both realised they wouldn't meet again until Monday. Sweet or worryingly fast; I'm not sure which!

And now one of he advantages of school; it's five o'clock and a small person beside me is saying "I really tired, Mummy, I go to bed now and have a big cuddle in the morning. Is that a good idea? Or not?" Sounds just fine to me, Little Fish.

Going Local part two

Stuffed marrow. Even better the second day; Mog fighting for a bite and Little Fish taking a mouthful, then gasping for a sip of water to take the taste away, and then turning round to smile at me "deeelishus Mummy, thank you for cooking that for me."
We made her day and did some cooking.
A blackberry and cocoa pudding
Which looked rather gorgeous to start off withAnd tasted even better than it lookedMarrow stuffed with chili beans and sweetcorn, and a pudding piled high with blackberries. Little Fish has finally achieved her five a day, with only a little sneaky fruit juice through her tube to boost it. She's also managed quite nicely on the dairy front, having raided the 'fridge when I was with Mog, leaving the 'fridge door ajar, and a trail of empty yoghurt pots dripping and festering across the hall and sitting room floors. Nice.

I'm still trying to work out her thought processes. Tonight I gave her her suppository (yes, we've moved on from the food, this is now a poo post, feel free to stop reading). She looked very thoughtful as I inserted it, gently posting it up as far as possible. "You reading my bottom, Mummy?"

It took me a moment to work out what she'd asked, and I checked with her. She confirmed the question. "That's a weird thing to ask" I replied intelligently.

She nodded solemnly. "It's a weird thing to do, Mumma" she confirmed. Some days my life borders on the surreal.

Tia

iPood

No not me personally.

Mog had an iPod for her birthday. An inspired present this; no more lugging around cases of CDs, she can have all her music on one small super smart little gadget. And she can lend it to her sister to doodle on and play with the calendar and calculator instead of causing mayhem on Mummy's iPhone.

We like it; nope, we love it. Mog gets to listen to her choice of music for hours on end. If she needs music on all night I can slip it under her pillowcase and quiet music will play into her ears and hers alone. The battery lasts for hours, the music capacity seems to be approaching infinite, or at least far more than Mog's current music selection, and one day I'll even figure out iTunes well enough to tweak the thing into even more intelligent behaviour.

That was the plan, anyway. Yesterday, after Mog's bath, we dressed her and padded her up and plonked her down on a beanbag so she could wiggle and kick and generally work herself into all sorts of non-physiotherapist-approved positions take the pressure off her backside. She had her music, Little Fish had her DVD player, I had my laptop and we all sat happily in some kind of space age technology-fest. Whatever; it worked.

And then it didn't work. The iPod was silenced. And Mog was laughing. And Mog had managed to wiggle until the iPod was underneath her, and then with fiendish good timing had managed a massive Movicol induced tidal wave which flooded the beanbag. Swimming is not, as it turns out, one of the iPod's strengths. It drowned.

I plugged it into the computer. Nothing. I left it alone for a few hours to dry out, and tried again. Nothing. I googled many things and tried most of them (avoided the "my iPod didn't work so I threw it across the room and then it did" one). Nothing. Just one smart shiny useless piece of metal. Tried again today and I think it's safe to say it's not a happy beastie.

OK, so an expensive mistake. Tomorrow I'll phone Apple and see what they have to say (I predict "we told you not to let it get wet, would you like to order a replacement?").

Today Little Fish's feed managed to soak my iPhone. My phone which is so much more than a phone, my phone which has photos and all my telephone numbers and my diary and all the girls' appointments for the next three years and just about every other piece of my life on it. And now it is not happy. And nor am I. I'm hoping that since it's just water not poo it might actually dry out. Meanwhile I know it's backed up; I'm sure there's a way of persuading iTunes to give me the information (and if there isn't, please don't tell me; I need to believe there might be). But one of its more minor features is going to cause me a bit of a headache - it is not only my phone (and my diary and my address book and my photo album etc etc etc), it is also my alarm clock. Tomorrow morning could be interesting.

Tia

Beds, Bugs, and Bodily Fluids

Thursday today; this should be my long day "off", the one day in the week when both girls are elsewhere for at least five hours. I already knew that wasn't going to happen; preschool have an all day outing which wasn't really great for Little Fish so today was a staying at home day.

Mog was a bit quiet this morning; nothing specific enough to keep her home from school but "not quite right" enough to keep me close to the phone. A worry which turned out to be justified as the call from school came; no fever, nothing specific, just quietly unhappy and uncomfortable.

So home she came, and onto her bed, where she's been ever since - not asleep, not fitting, not hot, just quiet, unresponsive, and copious quantities of foul smelling poo her only visible symptom. Not that helpful a symptom either; she's on Movicol so it happens fairly regularly.

I'd write it off to Movicol entirely if it weren't for the fact that as I cleaned up her third explosion of the afternoon I head the ominous phrase "I need a towel NOW" from Little Fish. Stupidly I ignored her plea, being up to the elbows in the drippy brown stuff, and walked back into the sitting room to find a nice neat tidal wave of vomit lapping at my toes.

I grab a towel from the bathroom and use it to mop the flood, feeling rather spectacularly bad for having ignored the "Oh please no water"s which had been shouted as I bolused her midday feed into her. Oops. A second towel reaches Little Fish just in time for her to catch the next retch herself, saving her brace for the moment at least.

Back to Mog who has taken advantage of her nappy free state to wee all over the bed.

Back to Little Fish who is now a fetching shade of puce, sweat pouring from her forehead. When the fever strip says 39, the tympanic thermometer says 38, and the under arm one says 36c, what do you do? I split the difference, give the paracetamol, which is promptly retched back, thankfully the orange version not the strawberry which might otherwise give false child-vomiting-fresh-blood-this-time concerns. I don't care about the invasiveness, I want the rectal version please.

Mop her fevered brow to the accompaniment of much "I NOT sicky, I NOT I don't like this" and a lesser mutter of "I want peanut butter and pâté and yoghurt in my mouth and apple pudding in my tubie". Suggest this possibly isn't the best plan at this precise moment in time, and grab a tissue to mop up the nose bleed caused by a combination of retching and temper.

Back to Mog to mop up again and try to cover the pressure mark. Chase the wheelchair service in the hope her new FoamKarve might be ready some time before the end of term. Get a standard noncommittal "her name's not on the list and no one is here to talk to you" until I mention the magic two words "Pressure Mark" at which point "can't help you please go away and be patient" turns into "I'll email the boss, I'll contact the company, I'll get them to call you back in the morning".

Realise my mother is arriving shortly to take Mog to Rainbows, but that Mog is in no fit state to get there. Attempt to tidy something beyond straightforwards vomit-mopping, but give up and begin blogging this instead.

Mop more vomit, wipe more poo, cancel our attendance at a proposed picnic tomorrow and pause to be thankful that the potential visitors we had for the Children's Food Festival are not coming down for the weekend.

And then I had a momentary breather, caught up with myself and reverted to the past tense. And then Little Fish started retching again, and a suspicious drip drip drip was heard from Mog's bedroom. And then Little Fish started flapping the towel I had been using to mop the floor.

And then my head exploded.

That is all.

Tia

Holiday Snapshots

Of the non-pictorial kind.

One four year old child, discovering the joys of an overhead hoist with buttons to take her from one end of the track to the other. One four year old child, left hanging over a toilet, discovered having escaped not just the toilet but the whole bathroom, now hovering over another child's bed. "Get back into the bathroom please" didn't seem an unusual request.

The response? "But I wanna poo in the boy's bed. Why I not poo in the boy's bed?" Really?

********************************

One woman pushing two children in wheelchairs. One woman pushing one boy in an excruciatingly awful to push wheelchair. One man pushing another boy in a large wheelchair. One crowded small town full of tourists and locals, all enjoying the sights.

One woman bravely breaking free from the crowd and crossing over to us. Ignoring the woman with the madly uncontrolled chair, and the woman with the wildly uncooperative tandem of chairs, she leaned in towards the man, brushed his arm, and told him how wonderful he was to be doing this.

We can only assume she thought the two women were inmates not fellow parents...

************************************

One hill farm, turned into a chocolate factory, visited on the wettest day this month. One hill farm with partial wheelchair access, including beautiful ramps carefully constructed under the duck pond. One shin height puddle between us and the chocolate.

Two very wet carers.

****************************************

One small child, four days later, still wanting to know why she can't poo in the boy's bed.

******************************************

One week, two families, three friends, four children, five jam doughnuts, six tubes of Pringles and seven good days. No photos from me because my hands were somewhat occupied, but a resounding audio memory built up of electronic singing beeping children's toys, Mog's music, Little Fish's "why why why?", the Wahooligan's Wahoos and a quieter child's "Hmm".

Next year we might make it into the water.


Tia

Wheels.

Wheelchair clinic at school today. Mog's wheelchair was already in school, so her buggy needed to squeeze back into the bus to get her from us to her classroom. We arrived to find no parking spaces, so pulled up outside the main entrance and began to unload to the rapt attention of one class waiting to go out on a trip. Twelve children, several staff, plenty of people to stare as I stomped up and down the ramp offloading a seemingly endless number of children and wheelchairs. And then a concerned receptionist or two who watched as I closed up the bus and drove it round the corner, leaving three children and four chairs stacked reasonably neatly by the front door.

The Wahooligan enjoyed the echoes in the school hall. Little Fish's wheelchairs first, and the fantastically excellent news that her power chair backrest can be easily adjusted. This is great; she's having surgery to her hips next week and will be splinted into a reclined position for the next wee while. She should hopefully still be able to drive her wheelchair which makes me scared but happy in equal measures.

Her little wheelchair next - this is not supplied by the wheelchair service, but it has been agreed that she should have an identical one supplied by education for when she goes to school. So the wheelchair service agreed to measure it up and sort out the ordering. This is also great news; instead of having a static posturally supportive class chair, Little Fish will have a super zippy lightweight wheelchair, and can drive her power chair to and from school each day. She'll have both chairs and her wheeled stander at school, so apart from moving from one chair to the other, she shouldn't need to rely on anyone else to push her about at all. Independence.

Mog next, and it was agreed that she has outgrown her chair and so will need to be recast for a new seat. I'm reasonably sure we agreed that back in January, but hey ho - it's happening now and that's good at least. Next up one tray for her chair. Due to her muscle spasms this needs to be padded top and bottom, which turns a thin sheet of ply into a monstrosity three inches thick. She was whisked off into the therapy room to have this fitted (no room for the rest of us there; it's a tiny room), and came back looking very smart but somewhat vacant.

Vacant did I say? She wasn't doing very much, that's for sure. She wasn't in fact breathing - her arms rested on her tray which was clearly very comfortable and a much better position than dangling down. Unfortunately this had the side effect of pushing her shoulders up, which wouldn't be a problem except that this forced her Hensinger up and into her windpipe.

We lowered the tray a little...

So now she has a beautiful tray which will only ever be used under very close supervision, and until her seat is adjusted, will have to be pushed down as far as possible over her knees - better squished legs than strangulation.

And then we came home, and then we took Little Fish to preschool, and then we picked her up and she was tired and obnoxious. And then the Wahooligan was sick. And I cleaned him up, and he grabbed the cloth I was mopping him with, and rubbed it into his eyes and then flapped it up and down, spraying the house with a fine mist of vomit. And then Mog asked to go to bed at 5.30, and now I can't decide whether I have a house full of poorly children, or just a pile of very overtired ones.

Early nights all round I think.
Tia

Shopping for boys

is no fun. Especially here, in the one shop which still sells children's clothing.

Now if I'd wanted something for the girls I had some choice.
Quite a lot of choice, actually.
But apparently boys don't need choice. So what we got was this:
But then, roadside pukers can't always be choosers. And it does at least nearly fit...

On the plus side, I may have found a way to skip the queue when handing children in to preschool. Take one small child in a buggy, face the many slightly earlier mothers with their super clean children, and watch one small child do a projectile vomit. They decided we didn't need to wait our turn. And Little Fish decided it was the most exciting thing ever and totally forgot to worry about who was picking her up.

One small child mostly mopped with the aid of a couple of muslins and a packet of wipes. Puke puddle on lap cunningly disguised by artfully draping child with designer cardigan, I called in at the chemist for dioralyte on the way home. And was then beguiled by the scent of fish and chips, and decided to grab myself some for lunch. I put them into the buggy's basket, carefully positioning them away from any drips, and headed home, thinking to myself that the vinegar should be soaked into the chips nicely by the time I had finished cleaning the small child, and so I ought to have just long enough to eat them before our next appointment. It was only after this that I realised just possibly the reaction of the average parent to a small child's projectile vomit would not be "oh, better buy chips for lunch as won't have time to cook" but something more along the lines of either "yuck, sick!" or else "oh my poor baby, let's rush you home and get you sorted out". It's possible I am no longer entirely normal...

Tia

Note to self:

Omeprazole is the clear liquid stored in the 'fridge.
Domperidone is the clear liquid stored out of the 'fridge.
The two are not interchangeable.

If three nappy wearing children are all living in the same house, it does not automatically follow that they can all three wear the same size nappies. And since you know full well they do not wear the same size nappies, it therefore does follow that the wrong nappy on the wrong child will cause big leaks.

On a similar note, small boys do not look good in Makka Pakka pants.

If you hang a tube feed on a doorhandle and attach it to a small child, moving the child away from the doorhandle will result in a milk bath. These, contrary to myth, are not good for the complexion. Or the hair. Or the floor. Or the wheelchair.

Alcohol gel is good*. It's useful, it's portable, it backs up soap and water nicely. It does not replace soap and water. It has a handy side use for cleaning bathroom tiles (101 uses for a babywipe and a squirt of Purell number 63). Under no circumstances whatsoever should it come into contact with eyeballs. So for future reference, if using it to clean glasses (101 uses for a babywipe and a squirt of Purell number 87), make sure there isn't a large blob left on the inside before returning the glasses to your face.

Whilst a drop of shower gel on a babywipe (1001 uses for a babywipe, of which the earlier Purell related list is a subset) can indeed help towards a quick freshen up at times when a shower is unfeasable, replacing the shower gel with Purell is a Very Bad Thing and one which should not feature on any list at all. Ever. Even if it does reach the parts no other cleanser can reach.

When attending a hospital outpatients appointment, do not ever assume that "oh no, it's only for bloods, it won't be long" means that buying a 2 hour parking ticket will be the safe option.

If you have a list of twelve phone calls to make, it is safe to assume that nine of these people will be unavailable, and three will be forgotten. Of the unavailable nine, seven will return your call at times when you cannot answer the phone, and the remaining two at times when you accidentally answer the phone, for example whilst putting a small child to bed or thirty seconds before finally being called in for the blood tests. In the three minutes your phone is switched off, a similarly safe assumption may be made that three other callers will leave messages unrelated to the twelve on the original list. Of these three, two will ask you to return their call but leave no number. The third will leave their number but the message will be incoherent. In the meantime, you will receive approximately thirty seven text messages, some from friends and some from professionals, and all of which will receive a cursory glance and a "must get onto that later".

Each phonecall you do actually manage to make successfully will lead, not to an item crossed off the to-do list but to thirteen more items added to the list, at least three of which will involve making further phone calls.

Buying the parking ticket will remind you that you have not yet replaced the blue badge on the dashboard. This will lead to several hours of gently wondering where it might be, before remembering that it is in fact in the wallet containing passports, court papers and essential medical info last seen at Heathrow after going through security. A dim recollection of stuffing said wallet into Friend's rucksack will lead to panicked communications confirming Friend does not have said documents any more.

When trying to replace one's wheelchair accessible van with another, slightly more spacious version, it is probably best not to continue to push the salesman who informs one that "you won't like that vehicle and this one's not for sale". Go elsewhere. Although the "we sold the last one of those last week" chap and the "oo you won't find anything like that anywhere" bloke probably aren't the ideal either. Somewhere, out there, there exists a converter who can provide what we want. Stop spending time phoning the ones who can't and won't.

And when the garage takes your van, keeps it for a fortnight then fails to return it as promised, returning it three days late and unrepaired, it is probably best not to try to phone and find out why.

To recap; today I had a list of twelve phonecalls. This has inexplicably multiplied with no single issue being totally resolved. I have lost our passports, I cannot park properly without the blue badge, my eyes hurt, I have one very cold bottle of Domperidone, the laundry monster has had an extremely large feed, I have an even longer list of must-dos for tomorrow, and I'm running low on coffe. I am tired.

No children were harmed in the making of this blog.
Tia


*as a hand sanitizer, not a drink.**

**although after today I may consider it.

Code Brown

Consider yourselves warned.

But on Friday, as my morning happened, this little ditty somehow made its way into my head.
For anyone familiar with the campfire song, it may be sung to "Three little Angels, all dressed in white"

And there was poo on the nappy,
Poo in his bed
Poo up his back, and
Poo on his head.
And I cleaned and I tidied
"Oh Bother"'s what I said*
And just as I had finished,
He did a wee instead.


I'm enjoying my holiday with two nice clean girls. They'd never do something like that, would they?
Tia

*or words to that effect

I like Saturdays in Spring, how about you?

Spring has sprung
and the garden is waking up. I'd make this into a beautiful "Tia and her girls spend a brisk spring day doing wholesome type things in their garden" post except that we didn't, and the truth will out. We might have done, except for the fact that the cats appear to have abandoned the shady flowerbed under one of our flowering currants in favour of the lawn, which is as a result covered in cat poo, in various stages of disintegration. On a plus side, the flowerbeds are looking great! But until I can bring myself to somehow gather all the piles of poo and post them somewhere (I'm thinking the compost bin wouldn't be too happy to have them?), we won't be spending a lot of time sitting in the back garden.

So, we did what girls do in times of crisis. We went shopping. We had three things on our list. One hour in, we had acheived this:She's pleased with them.
Little Fish on the other hand is less easily impressed. She was measured, she was given a few pairs to choose from. I then vetoed half the pairs due to allergies (how can a child be allergic to shoes, ridiculous), at which point she decided she didn't want any new ones at all. My bank balance thanks her.

Or it would, if she hadn't then decided we needed "dinner shop, pleeeeeese Mummy?"

Since by this point we also needed to do the cathing thing again, it seemed like a reasonable suggestion. We found a cafe with a perfect "have to cath a small child" cubicle, did the business and had a nice lunch. And as we left the cafe, Little Fish picked a tiny bit of leftover from her knee and popped it in her mouth, chewed and swallowed, and then turned to me and said "that was a lovely dinner, Mummy, thank you very much." Sometimes it's nice having a verbal child.

No luck with the rest of our shopping (side note: where do you buy big girl pants for little girls when Woollies and Adams have closed down, and the only other shop in town only stocks frilly knickers for babies and cropped ones for six year olds?), so we hit Waitrose where LF was delighted to bump into Grannie and Great Grannie and Grandad. Mog meanwhile declined to show off her new shoes and indicated her disdain for mere food shopping instead.

Home again, and back to chaos. Home to two cats, who are both seriously disgusted with me. Comeback has been placed on a renal diet, to complement his kidney and thyroid medications. He is not impressed with this, licks small amounts of gravy and then stands in the middle of the room, crying loudly. Goway is fascinated by the ludicrously expensive renal diet dried food and insists on emptying the bowl, refusing to have his own high-protein food. Little Fish sees me standing in the middle of the room coaxing them both to eat their own food and talking about how delicious it is, and decides to try it out for herself.
And then it is bedtime, and I separate Little Fish from the cat food and parcel her into bed. She is not impressed with this and tells me "Wee Wee in your Mouth Mumma". Now there's a curse. Mog is even less impressed, and switches from quiet but happy to full of spasm and scream and outrage before I have even closed the sides to her bed. We had four hours of this last night, so rather than wrestle through it again I fish her out and put her into her armchair. Where the roars settle to whimpers, but the problem is not solved. I clip her collar back around her and she relaxes. This is not great; she can't wear it twenty four hours a day, we don't have enough socks to keep changing the covers, she will get such a sore chin from it.

So I have a cat who won't eat his prescription food, a cat who won't stop eating the other cat's prescription food, a girl who won't stop eating and one who won't stop crying except to demonstrate her beautiful stridor. I'm considering rethinking my position as functional adult in this household, any takers?

Tia

My Funny Valentine

A small child in a bathtub, washing herself. A song bubbling from her lips, a sweet, sweet sound, the tune "Skip to my Lou", the words her own inventions.

"Washing my legs scrubadub scrub
Wash my feet rub an scrub
Wash my bottom, squeeze a little poo...."

My charming child.

And then it is time to get out of the bath, and as I gently dry between her toes, she leans forwards and says "Mummy I love you." And as I melt into a puddle of mothergoo, she continues "Mummy, I love you SO much, so much I squeeze bubbles from my bottom just for you".

Love you too, kid! Is that my best valentine ever or what?

Tia

Code Brown - the revenge of the hospice

Helen House is about ten miles from here, a twenty minute drive. Today on leaving though, we had a trek to the farthest outposts of the county for a ROSY morning, then lunch with friends before coming home. So the decision by the hospice staff to feed Mog extra Movicol late last night really was a touch diabolical.

Mind you, I have no one other than myself to blame for the widdle puddle which appeared under Little Fish's high chair at lunchtime*.

And now we are home. I have photos, but the cable is elsewhere. I have stories and anecdotes and wild witticisms. And no energy - yes I know I've just had a really restful four days, but right at this precise moment in time "you can have no more respite until after May 1st" is shouting louder than "you have just slept well for four whole nights in a row".

Tomorrow the balance will be restored.
I hope!
Tia

*I blame myself for not changing Little Fish before this happened, I was not the widdler. I was however the one who spilt the Diet Coke, leaving a much larger puddle beside the smaller, drippier widdle puddle.