Every Day a New Adventure

Fun times all round today. A nice, reasonably civilised, meal with friends. We only took up one end of the coffee shop in question, sampled most of the menu, drank most of the coffee, and attracted just one complaint about the loudness of the laughter. No complaints about the conversational subject matter, so we can't have been that awful.

The three smallest children finished feeding first, as children often do when the grownups are too busy talking, and asked to go down to play.The coffee shop being just minutes from their house, and a lovely safe and traffic free network of footpaths and grass dividing the two, we were more than happy to let them roam free. This wasn't quite what we'd expected to see when we glimpsed them from the window, but hey, wheelchairs are cool, right?

Meanwhile, Miss Mog struggled with some tummy troubles, enjoyed a good cuddle, and the grownups had another cup of tea.

Rounding up the littlies, we sent them on their way home, Mog and I arranging to meet up back at their house with the bus. And so I loaded Mog onto the bus, clamped her in, got her settled with music on the phone, tossed the keys onto the front seat ready to go, folded the lift, slammed the back doors shut, and heard a sickening clunkclink, as the bus locked itself shut. Mog inside, phone inside, keys inside, me outside.

Bother, I thought to myself. Oh what a jolly nuisance.*

Grabbing a couple of random shoppers, I accosted them with my news, and they joined me in checking that all the doors really were locked, and all the windows really were completely closed, and all the keys really were in the front seat, with none carefully stowed anywhere more accessible, and no handy husband with a spare set anywhere.

Thankfully, the Little Princess was happily settled with our friends, although I don't think they'll forgive me for not letting them know what was happening next. AA couldn't help (Note to my US friends; that would the the Autmobile Association, i.e. the "fourth emergency service" and not Alcoholics Anonymous), but suggested calling the fire brigade. Mog decided to celebrate being locked in a hot bus by having a nicely visible even to the untrained eye set of seizures. People suggested an ambulance, I declined on the grounds that the emergency meds were in the bus with Mog, and once we could reach her, we'd reach them too and problem solved.

A nice crowd had gathered by this point, including various men-with-vans, all of whom apparently had no problem jigging their own locks with screw drivers and coat hangers. None of whom could repeat the trick on mine. And then finally the sound of sirens, and a rather large fire engine stormed the carpark, ready to do battle.

Various windows tapped and then taped, ready to be shattered if necessary. Two windows attacked more gently with crowbars and screwdrivers, until one fairly quiet fireman offered his services, having allegedly been a bit of an expert in these matters in a previous unofficial career. A little more tapping and taping, and the window was open; only damage being repairable with superglue (note to self: buy some decent superglue).

One fireman posted in through the open window, head and bottom first, leaving one leg to be posted through after him by a crowd of willing workers. Sadly my camera was still an integral part of my phone, which was perched on Mog's shoulder, and she wasn't in the mood for learning new skills. Shame. Fresh cool air and a slug of diazepam stopped the seizures though, just in time to rescue our friends from the Little Princess, and head on home after a very welcome cup of tea.

And now the Little Princess is fast asleep, having worn herself out telling the tale to all our neighbours, random passersby, and Grannie. And Miss Mog is in bed, but not very happy, with a painful something, but not sure what.

And I'm here, thankful for speedy firemen and the kindness of random strangers who stayed to make sure we were ok, and for friends who didn't mind being late to their own appointments (or who, if they did, hid it well), to look after the Little Princess. But now I had better go and see if I can make Mog more comfortable.

Tia

*Or words to that effect

You know you're tired when

You stand at the door, pressing the "unlock" button on the key fob, hearing the click clack of the lock, and can't figure out why you can't open the door. Until you realise the front door of your house does not in fact have remote central locking and put the car key down.

You get inside, and realise that even if it did have central locking (and what an outstanding idea that would be), it would not have locked the house, as you left the back door wide open.

And then you realise you are wearing your slippers.

Tia

Some Saturday

I like Saturdays. They're the one day in our week when we don't have carers. I love that we have carers, I love the carers we have, and I wouldn't be without them. But on Saturday, the house is ours and ours alone. No need to set an alarm, no need to be dressed before seven in the morning, no need to think about making polite adult conversation (or cups of tea).

Well, that's the theory anyway.

A miserable night with Mog who decided to spend late evening failing to find the right position to breathe in. Repositioning and she appeared to be breathing quite nicely - as long as you didn't listen to the shrieking monitor. A blast of oxygen and the monitor started agreeing and I stopped mentally trying to work out where I could dump Little Fish if we needed to do the hospital run. And then the normal midnight, two o'clock, four o'clock pick my jaw up please alarms. Staggering back to bed after each one, falling asleep instantly, surprised each time to discover two hours have passed since the last alarm.

And then "Muuuuuum!!!! I waking UP!!!" fortissimo from another bedroom. 6.15AM. Ug. Stumble through to bedroom, hit switches to stop the vent and humidifier, brace back and lift smal child. Pause for swift cuddle perched on edge of bed (for if this is missed, force ten tantrums ensue), then hobble to sitting room. Plonk small child in chair, push button for High School Musical, weave back to bedroom, about to sit down when "MUUUUUUUMMMEEEEEEEEEEEEE I need a drink and I am actually STAAAARVING".

Toast. Water. Fall into bed. Find groove left from previous kip. Insert body, close eyes, back to sleep and DONGGGGGGGG Text message. 6.50 and parents texting from Tanzania, where they are trapped by Icelandic Volcano, wanting to know if the airports were open yet.

Fire up internet. Discover airports still closed. Reply. Rediscover groove. Close eyes. DONGGGGGGGG another text. From someone else. 30 minutes later and another one. Repeat until 9 AM, inserting one stagger over to the sitting room to replay HSM. Discover dead bird in hallway, thanks cats.

Give up. Drink vast amounts of coffee. Dress. Attempt to dress girls, discover Mog still fast asleep. Find Little Fish a pair of trousers and somehow end up changing water in fish tank rather than persuading her into them. Sort meds and milk for still sleeping Mog. Dress Little Fish.

Mog sleeps on. Cat demand food. More coffee. Little Fish demands entertainment. And conversation. And Peppa Pig. Carry out protracted internal debate over sinister similarities between narrative style of Peppa Pig and that of Big Brother. Conclude that behaviour and development of participants and audience in both cases potentially identical.

More coffee. Lunch. More texts. Mission to find someone to take over essential jobs from parents who will not be home as planned to do them. Partially successful. Persuade Little Fish a picnic on the sitting room floor every bit as exciting as a picnic in the park.

Mog eventually wakes at 12.30, having had only one episode between 4 and 12.30. Wonder why she couldn't have done that earlier in the night, when I might have been able to take advantage of it. Dress Mog, note that she is wearing the same pad I put on her at 7PM and that it is only barely damp. Decide this is possibly not great but probably not urgent.

Get Mog into her wheelchair. Little Fish grabs small blanket and crashes out on sitting room floor, foot in her banana.

Mutter mightily.

Mog grins. Attempt to provide stimulating afternoon for Mog without disturbing Little Fish. Mog laughs and tries to kick her. Little Fish senses attempted kick from 2 feet away, wakes up and cries.

We decide to go out. Walk through the park; Little Fish is not interested in playing. Give up and head for chip shop. Sausage and chips and mushy peas and then bump into a friend who has locked herself out and has to wait for husband and children to return.

Bring friend home, sit in garden, Little Fish eats chips, we drink tea, Mog kicks my chair, and the cats poo. Nice.

Friend goes home, I clean Little Fish's gastrostomy site; Little Fish throws up, Mog laughs. Little Fish weeps, I post her through her bedtime routine as fast as I can, she settles in bed after telling me "It's not fair that my tummy hurts, Mummy". "Life's not fair sometimes" might not have been the best response, but she seemed to accept it. We read "No Matter What". Little Fish reciting alongside me, Mog grinning behind us. Little Fish rolls over. Silence. Bliss.

Mog twitches. And giggles. I reach for her to post her back into bed and realise from the squelch with which she separates herself from her wheelchair that the dry pad issue has been rectified. Post one less squelchy sweeter smelling child into her bed with appropriate cushions and monitors, watch happy giggly twitchy child morph into grizzly snurfle monster. Reposition. Observe monitor displaying 100 100 and exit room before it changes.

Write blog, and now I just need to wait twenty minutes until the air traffic report is updated, send that to Tanzania, hope the lightning they mentioned strike didn't hit anything too essential, and then get back into the groove, pull the covers over and hope tonight is better.

Tia

Dear Me,

Wake up, sit up, don glasses, place feet on the floor, stand up, then walk out of the bedroom. Incorrect order will result in tangled bedsheets and misplaced glasses, and will not achieve leaving the room.

When dressing, it is wise to put underwear on before the outerwear. You are not Superman.

The monitor won't stop beeping if you only dream you've repositioned Mog.

If you can't remember the name of your friend's son, you probably shouldn't get in a car and drive to meet them. You do not get bonus points for working out the boy cannot be called Josephine.

Tia

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?

Tia

Plackard Caps

I may not have been blogging, but I've still been having thoughts (it happens sometimes, take that surprised look off your face). And I've come up with an invention. Those LED signs which seem to be everywhere now, flashing helpful messages:

Your doctor's clinic is
currently running
45 minutes late we
apologise for the
delay which is due
to large numbers
of patients need
PETER SMITH
TO DR JONES
ing to be seen.
Coughs and sneezes
spread diseases
wash your hands
if you have 'flu
go away. If you
don't why are
you here?

That sort of thing. I need a personalised one, one I can wear over my head. It'll have an assortment of messages to suit every occasion. For example:

I am not staring
at your son. I am
looking at his
wheelchair and
wondering if it
might work for
my daughter. If
she were here you'd
know that but
because I'm alone
I probably look
like I'm staring
at your son.
Sorry.

Or, coming from the other side of the divide

If you keep
staring at my
daughter you
will walk into
a lamppost and
I will laugh.
Thank you.

and

No she isn't
asleep and she
isn't dead she
just likes to
close her eyes.

This hat wouldn't just have our life specific messages though, there would be general every day ones too. Health:

No I don't
have swine 'flu
it's just a
sneeze.

Hey you!
Don't spit
in the street
it's disgusting.

Traffic:

You in the big car
beeping the old
lady as she pushes
her trolley slowly
across the road.
Think about it -
would you really
prefer her to go
back to driving
again?

and teenagers:

I know it's been
a whole 12 hours
since you saw
your friends last
and lots has
happened and
you need to share
it all all at once.
But
This is my
pavement too
please
move over.
You won't die
if you have to
walk in groups
of less than 5
aside you know.

So that's my invention. Pat Pending. Interested investors please form an orderly queue.
Tia

Inchstones

Inchstones is the term a friend uses for measuring the progress of our children. Forget milestones; that endless roll of holds head up, rolls over, sits up, crawls, walks, all before the child's first birthday. We celebrate the inchstones - my two year old balanced upright for half a minute this morning, WOOHOO! My five year old held her head up and looked me in the eye, HURRAH! My teenager didn't scream when we watched my choice of DVD, CELEBRATE!. Tiny things to the world at large; huge to those who know the child. I love it; I watch friends' mainstream babies, and they are doing so much, so fast. Changes visible from one Sunday to the next; miss a couple of weeks and there's a different child. Give me the slowness of the inchstone any day, days, months, years even to appreciate one change before moving on to the next.

We had our own post-lurgy inchstones today. Little Fish wasn't sick once - BREAK OUT THE FIREWORKS! Mog ate a teaspoon of avocado and two teaspoons of chocolate sauce for lunch - MUCH CHEERING! And I, I walked to Mum and Dad's house for lunch; it might only be ten minutes away but it's the first time I've been further than our garage all week. PARTY! Well no, sit in a chair and breathe for half an hour, trying not to use any further energy. But hey, we all left the house, and we're all getting back to what passes for normal.

Tomorrow we might even try driving somewhere. But for now all those capital letters make me feel tired. Night!

Tia

The sense of lethargy in this house is overwhelming

Wake up, blow nose, cough, go back to sleep.
Wake up, wipe someone else's cough, go back to sleep.
Get up, get the girls up, get feeds and meds all set up, music and DVDs on, head back to bed.
Be smug about having managed to get everyone dressed and drugged.
Bring littlest one into bed, cuddle up together, go back to sleep.
Find some energy, cook lunch, do lunch time drugs and discover that although larger one's feed was set up, I forgot to turn it on (five hours earlier).
Go back to sleep.

Realise new cleaner is coming next week and house is suffering, decide to tackle bathroom as smallest and therefore hopefully quickest room to clean. Emerge, several hours later, to discover Little Fish has been mimicking my efforts in the sitting room. Only, where I have been sorting items into rubbish, recycling, and really-need-to-find-a-better-place-to-store-that piles, she has been following the "when in doubt, pull if off the shelves and out of the cupboards and stir it around on the floor" method of cleaning.

Attempt to begin process of cleaning sitting room. Get into ridiculous shouting match with Little Fish over her desire to put the kittens in a box and pull it around the floor as opposed to my desire to put paperwork in the box and burn it file it away. Realise this is madness, settle for clearing the settee, and, as a compromise to the cleaning ethic, hoover the crumbs out from under the cushions.

Sit down, exhausted. Realise that although I spent several hours in the bathroom cleaning, I didn't actually clean the floor, sink, bath, or loo. Decide I might not actually be fully functional just yet.

Make macaroni cheese. Eat lots, watch Little Fish do the same. Remind Mog she can eat again once she's gone 24 hours without needing suction - I'm not hoovering cheese. Not after the hummus incident. Begin the getting the girls to bed process. Watch Little Fish vomit the macaroni cheese. Put the girls to bed.

Debate the wisdom of clearing the sitting room which is now officially way past disgusting. Decide instead to sit down again. Take phone call from my mother, who informs me that the adult care team in this county are continuing to attend clients who have swine flu, unlike the children's care team, who have refused to cover our visits this week. Discover I wasn't actually angry about having no care with all three of us ill until I had heard that. Shelve fury as it burns unnecessary energy.

Consider standing up to go to bed, but decide to rest on the chair for just a little while longer first...
Tia

...

Three parcels in the post this morning, hurrah. Except that the first was medical supplies for the Wahooligan, delivered to the wrong address. The second was a reprint of the photo books I made for Great Grannie's Birthday, with the same errors repeated on them. And the third was an iPod to replace the one which got wet, only it isn't the same model and won't work without headphones, so isn't any use to Mog.

A lovely day with friends. Peaceful, despite at one point having nine children with just two adults. Cake and conversation; good times. Lots of coffee, and only after the 3rd or 4th cup did it register as uncaffeinated; no, it doesn't affect the taste but it certainly affects my energy levels. Another cup, and another, and the waking up just wasn't happening.

I blame the strange friends who manage to function adequately without the caffeine - including picking uncaffeinated diet coke for lunch - for what happened next. A short drive home through the rain, calling in at Homebase for socket covers, for tomorrow I have a fostering-related health and safety inspection, and all my sockets should be protected from prying little fingers. Found the socket covers eventually (ok - I didn't; but the helpful chap in uniform did. I think he worked there. I do hope so - but thinking back I'm sure their uniform was green last time I was there, and this chap was wearing navy. Oh well), queued, watched them scan, then realised I'd left my purse in the van. Oops. Mad dash through the rain back to the van, grabbed the money, requeued, finally managed to pay and exit.

Back home and one very tired Little Fish informed me that her friend P's Mummy had told her she needed a shower tonight. Thanks, friend! Ham sandwich and a biscuit for tea which makes three meals in a row.

Opening the door I was greeted by the cheerful piercing chip chip cheep of a smoke alarm with dying batteries. This would ordinarily be fine, except the fire service replaced my battery operated smoke alarms last year with ones with integral batteries. This is now glued to the ceiling and cannot be opened or removed. Good thinking, chaps. Every 37 seconds we get a new chirp from it. I've tried prying it from the ceiling, I've tried hitting it with a broom, I've tried muffling it with a towel. It is of course the smoke alarm by the bedrooms, not the one in the playroom...

I'm shelving the problem for now; I have a babsitter tonight and she's due in 15 minutes. I'll hand her the broom and tell her to get poking - it's possible to reset it for about 20 minutes at a time but only by manually setting it to alarm properly. It'll be her choice which she prefers. Meeting old school friends tonight which should be fun; provided I can stay awake with my caffeine levels at dangerously low levels. Perhaps I should order an espresso aperitif.

Tia

Open plan living.

The joy of an open plan house is that you can hear everything from
anywhere in the house. The curse of an open plan house is that you can
hear everything from anywhere in the house.

With four somewhat wonky children who have reasonably early nights, it
is nice to be able to sit in the sitting room knowing we will hear any
of the younger generation should they have a seizure or fall out of
bed, stop breathing or do any of the other irritating things small
wonky children manage. On the other hand, it is somewhat less helpful
to be able to hear everything from each of the bedrooms.

Last night we went to bed. The noise of this woke Mog. Her screams
helped another child to have a major seizure, and the rest of the
night was spent alternating apnoea and seizure alarms, dosing
different children with painkillers, sedatives, seizure rescue meds,
debating midnight ambulance calls (for once not for one of my girls),
swapping beds and generally causing much mayhem until finally the
worst offender settled at 5, just in time for the least disturbed
child to wake up for the day.

Today four children are well, happy, giggly and busy. And three adults
are discovering there is no coffee strong enough. Oh, and this photo
has nothing to do with any of that and everything to do with how cute
small girls look when they have new matching outfits courtesy of a
very limited choice in the cheap shop. Mog is distinctly underwhelmed.

Tia

One of those days

An accurate reflection of the day I think. Or at least, of how I felt for much of the day, having spent much of the night up with Mog. Mog herself had a quiet day, snoozing through most of it and waking up just in time to demand a taste from Friend's dinner plate, and then rather unfortunately waking up just now as I climb into bed beside her. Joy. Gives me a chance to blog before sleeping I suppose- I'm sure she's just thinking of you all really. No more seizures though; I'll take a little insomnia over that any time.

A nice day. A revised plan given the night's activities, but one which still pleased us all. Little fish and I did the breakfast thing leaving Friend with a sleeping Mog. Four of us all finally ready somewhat later than planned, and then all of us to the station to jettison most of our luggage. It is great to know it will be waiting in Interlaken. And surprisingly stressful to try to sort out what we can manage without for 48 hours. Only 48 hours, so a big temptation to try to do without most of it. But 48 whole hours, and the knowledge of what can happen in that time...

Still, baggage dumped, and acornsr of the old town still to explore. The Hofkirch admired, the Lion Monument discovered, and a lace shop visited. The latter may have been a mistake. Little Fish has morphed into little Grub Monster; for some reason although the town is the cleanest place I have ever been to, there is a black grime covering the streets which transfers to her wheels, and from there to her hands and then face, clothes, arms, sandwiches, andeverythibg else she touches. The lace lady was very forgiving.

Raclette for lunch, hurrah! A proper Chalet School outing meal. Mog decided this was worth waking up for, especially when accompanied by mountain music. Little Fish decided it was worth hiding from. We're not sure why.

A leisurely waddle stroll back to the lake, where we decided no matter how beautiful the lake cruise, we were not quite up to carrying the girls up to the top of the boat for it. Friend vetoed the pedalos too, so we hoofed it back to the hotel instead, where Mog had another big rest whilst Little Fish stripped herself off and then dismantled a ham sandwich, taking great interest in the fact that slices of ham applied directly to the skin are "a bit coldy, Mumma" whilst simultaneously refusing to eat any of it. Eventually I threw it in the bin, causing sons and lots of "that my favourite"a. Some days I seem to exist to frustrate her. Yay for me.

Bed for girls and silly time for grown ups. A giggly evening full of conversation incomprehensible to anyone not the two of us. Lovely. And now bed, and hopefully sleep, if Mog settles before waking LF. Tomorrow we tackle Mount Pilatus. Legend has it the body of Pontious Pilate was drowned in a lake at the top. Unlikely, but appropriate for tomorrow I think. And then on Saturday we leave Luzern for Stage two of our holiday. It occurs to me that our week could have happened in another family's weekend. The town could have been thoroughly explored in a day, mountains could have been conquered the following day, and the family have moved on. And we've spent a week doing small things. But that's ok. Slow time again; time to look and see and appreciate things. Time for Little Fish to experiment with my camera- and if anyone knows how to replicate her above effort I'd be grateful; it seems strangely appropriate. Time for streets to become familiar enough that a little child can lead us through them, time for a larger child to rest in the shade. And time for Friend and I to laugh ourselves silly over nothingnesses. So yes, we might have seen more, done more, than we have. But I'm not convinced we'd have achieved any more.

And now Friend's light is out and Mog's sedative has taken effect. And I must join the sleepers. Night folks,
Tia

Tiredness is

Mistaking this:For this:

Exhaustion is:Not noticing until you are halfway through it.

Now if you'll excuse me, I'm off to try that again:
Tia

I give up.

I just tipped my nice hot lemsip into my cutlery drawer.

And emptied it, dripping, into a bowl of hot soapy water. And made the mistake of letting Little Fish help wash them up.

Two minutes later I had this
on the table and a flood of hot soapy water all over the kitchen floor.

I went to get a towel, and discovered Little Fish had been ahead of me.
Is it bed time yet?
Tia

Washing the blues reds away

So, two weeks ago, I bought myself a rather nice, smart, soft, beautiful cardigan. This cardigan actually (and I paid quite a bit more than that, even though it was officially "on sale"). It's pretty. It has thistle-y things on it. It's snuggly. And it looks fairly smart. Oh, and it's warm.

Somehow, it got included in the wash I did this morning. A white wash, naturally. I now have beautiful pink pants, vests, bibs, socks, tshirts, and school uniforms. Oops.

That, though annoying, is just one of those things. I haven't done it for a while, it was probably about time I did. Mog's white long sleeved tee has actually come out a very faint marshmallow; it's very pretty. And her uniform polo shirts no longer look dribble stained - just pinky-orange. That is also possibly an improvement. I should probably get the bleach out.

But oh, my cardigan. I mourn.
Little Fish has a nice new felted wool jacket. Much too nice for a muddy toddler.

Tia

We haven't had the best of days.

Little Fish woke up this morning saying "I not go school today too sad to go school." And stuck to it. She clamped her hands over her wheels and refused to move. I carried her to the bus, she screamed. The bus had no carseat; in the seconds it took me to fetch ours she went completely loopy and the driver refused to take her.

I drove her to school myself and left her in the classroom, her screams echoing through the corridors for a thirty second eternity until she found a friend and a toy and was fine.

I came home and argued with the wheelchair repairman who, despite admitting to having a 3 year old son, couldn't understand why my own 3 year old shouldn't make do with a buggy and might object to being pushed everywhere by someone else. Thankfully he was only in charge of repairs not supply.

I spent one hour on hold and then had to leave a message anyway. I spent another age waiting to speak to someone else who wasn't available. And two phonecalls bringing yet more problems.

I have been lied to by one person, misled by another and misunderstood by a third.

And my kettle has broken, I have trodden on Little Fish's glasses, and whilst typing this Mog has woken up into a seizure.

There's more but that's a flavour of the day.
Tia

edited today Tuesday because for some reason I wasn't able to get back into blogger to fix the mistakes last night. And because apparently I don't type so well when I'm cross!
Tia

A Woeful Wednesday

A definitely woeful night. An early night for once, in bed and asleep before ten, and then woken at 11 by Mog's feed pump which I'd forgotten to turn off, oops. Mog definitely woeful but settled with the aid of the sedative I'd been congratulating myself for not needing earlier in the evening.

Midnight and Comeback start howling at the moon, waking Mog again.

At 1 Little Fish had nightmares.

At 2 Comeback decided an encore was in order; I decided a night in the kitchen was definitely what he needed.

4.30 and Mog awake again and needing pain relief.

5.30 and time to turn Little Fish.

6.30 and Mog awake and needing her dribble drugs. And then it was time to start the day.

A new carer running late for the third visit in a row - it doesn't bode well for that point in time when her checks finally come through and she starts working rather than shadowing. And a woeful Mog unimpressed at getting dressed.

A woeful Tia with the discovery that the "service me now" spanner icon on Little Fish's Nippy was flashing merrily this morning - one trip to the hospital to get it fixed.

And one very woeful Little Fish theoretically playing the part of the "Inn-Keeper's wife" at her preschool Nativity. Much woe at the thought of sitting on the stage with the other children, much woe at the thought of spending time with the preschool staff, much woe at anything other than sitting on my lap trying to eat my jumper. It is at times like this when I question the wisdom of trying to get her integrated into mainstream life; last year for the special school Nativity she was a bouncingly cheerful Angel happy to play her part and get on with things.

More woe with the realisation that the knob from Little Fish's powerchair controls has jumped off and run away again. We retraced our steps and couldn't find it; I will have to create something (again) with pen lid and blutac.


Woeful news from the doctor's surgery - no blood test results back yet, and the sample was probably too small to test. We will know tomorrow afternoon. Which means no point in booking an appointment for tomorrow morning as any doctor we see will simply tell us to wait for the results. It's getting very close to Christmas to be thinking about making major changes, but if things stay as they are I don't see how we will be able to make the long drive to our holiday cottage on the 27th.

Side note: Becca, I like the idea of perching her precariously over a bed pan; and if she had her humour back she'd find the whole idea very very funny. And would perfect the art of kicking the filled item off the bed and up the walls. You mentioned staying in - does that mean you're out of the nursing home now? Excellent news if so! If not then do we need to be mounting a raiding party somehow to spring you? Mog has a good splattery cough she could threaten folks with if necessary.

Some cheerful news from the hospital, there's a spare ventilator and all we have to do is swing by and pick it up. We do so, bumping into a net-friend whose son has just had a minor op and is doing well. We panic a more local friend who knows Mog is ill and sees our van parked outside the hospital - and we have time to chat for a bit before her son's minor op and our drive to our next destination. I wonder what it says about us, that a quick trip to hospital becomes a social occasion?

We'd planned to skip our next activity, but since I'd forgotten to cancel it and we were driving past anyway, we called in at the hospice for a Christmas music making celebration party thing. Neither girl was overjoyed with the music - which says a fair bit about Mog's present state; normally she'd have been fascinated by the combination of violin, 'cello, and enthusiastic but amateur bells. Instead she decided to demonstrate to assorted staff and families just how well she can do being ill.

Friend and I decide to stay on after the party for a while to let the traffic die down before driving home. This proves to be a bad move. Mog's glycopyrrulate has very definitely worn off, and the journey home is interspersed with short dashes from driver's seat round the bus to passenger side sliding door to empty Mog's mouth for her, with Little Fish shouting encouragement all the while. It's tempting, but I think I am right in believing a three year old with learning disabilities should probably not be trained in suctioning her bigger sister? I know I tell people it's easy but I suspect that might be pushing it slightly?

We do however make it home eventually, where the woes begin again. The cats are deeply woeful; Little Fish has emptied a bowl of Christmas sequins and glitter over their food. It's festively sparkly but they are unappreciative.

Mog's evening woes begin in earnest and she cries the cry of the very tired, very cross, hot poorly person. And keeps it up until her medicines switch her off, several hours later.

Little Fish's woes are delayed somewhat - a minor wibble rather than a woe at the prospect of actually eating the pureed broccolli rather than using it to fingerpaint her tray - and then a major wobble at the idea of having a tube feed. And then big big woes; the new ventilator has all the same settings as the old one, it has her mask and her elephant tubing, and is on the same shelf in her room and plugged into the same socket. But it sounds and feels different to her old one. Gentler somehow; comforting to me. But deeply distressing to her, used as she is to the whoosh and rattle of the one she loves.

But eventually both girls are settled and their woes are set aside for the night. Leaving space for a small mini woe (a wee?) of my own; the takeaway shop was out of chicken dumplings. Shocking!

So now it is past ten, both girls are still asleep, one tucked up in her bed with a soggy sleeve to suck, the other slumped in an armchair with a gentle rattle at the back of her throat. And it is time for me to be horizontal somewhere without a computer.

Goodnight
Tia

Lurgy

So after a rotten night, I took Mog to see the GP this morning. Our own GP is on longterm leave at the moment, which means we get to see whoever is on duty or has a spare slot when we ring up. Not ideal, but fine for emergencies. However this means that adding the two on-call doctors we've seen that's four different doctors for one bit of illness, hard to find the continuity in that.

Today's doctor was thorough. A good chest listen and stomach squidge, temperature (high), sats, ears and throat, urine discussed and discounted, medications checked, and child observed closely. And the doctor said "hmmm" lots and "yes I can see what you see" several times and "no she's definitely not right is she" a few times and then "come back on Thursday" once. She isn't ill enough to be in hospital (I agree), she isn't right at all but she doesn't have any obvious signs of infection in the usual places, so antibiotics probably not going to be particularly helpful. So we plug on with the antipyreticals and extra water, keep her comfortable and will probably see him again on Thursday. At which point I do hope he'll actually do something - although I'm not sure what? Swabs, bloods, something? There must be some way of identifying what has knocked her for six in this way. She's exhausted.

One strange thing - usually her seizures are quite jerky twitchy things. She's so floppy with this that even her seizures have slowed down, less starfish more jellyfish, less coat hanger, more scarf waving in the breeze.

And so for Mog the school term has finished early - Happy Christmas?

Edit: The doctor we saw has just phoned and would like us to arrange a blood test for Mog to make sure it isn't her new anticonvulsants causing this. Naturally the only time the nurses can do a test is tomorrow morning right at the time when Little Fish is due back from school, so now I guess she's finishing her school term early too. 'Tis the season to be Jolly ill

Tia

Fretful Friday

Following on from yesterday...

Mog kept me up til silly o'clock at night, then woke again at stupid o'clock in the morning. And again at totally insane o'clock, and finally at child-you-are-risking-your-life-can-you-really-not-cope-without-music-for-twenty-minutes o'clock. After which I gave sleep as a bad job; there are times when it just isn't going to happen.

So, child awake, dressed, hair tamed, school bags assembled, bus arrived and Mog safely shipped to school for the day. Coffee poured, washing up finished, washing in machine, and the phone rings. It's school. I have forgotten to send in Mog's sling, without which she can't be changed or moved from her wheelchair. I promise to drop it in as soon as Little Fish wakes.

And then, because the other phone somehow got left in Little Fish's bedroom last night, she is awake. And feeling much better than yesterday, although apparently not well enough to get dressed. Upsy Daisy pyjamas for the day it is then.

I strap her into her carseat and throw a blanket over her, we head off to school with a sling. I leave her in the car and throw the sling out at a somewhat startled LSA. And then since we are in the car anyway, we head over to Kidlington to collect a parcel. Again Little Fish stays in the nicely warm van as I shudder my way to the counter, pay the charge and collect my enormous roll of Zorb. Little Fish gets the giggles as I post it over the top of the driver's seat and onto her head.

We are about to drive home but I am distracted by signposts promising "Fresh local Christmas Trees". We investigate. And are directed through country roads and round corners until suddenly we find the world's smallest Christmas Tree shop. Not unnaturally, Little Fish declines to stay in the warm at this point, so I wrap her in Mog's poncho, hoping to disguise the pyjamas and bedsocks somewhat, and perch her on one hip as we make our choice. I then have the pleasure of hauling one 3foot Christmas Tree to the wrapping machine with one hand, balancing Little Fish with the other, as four members of staff stand watching me and sipping hot chocolate. We get to within 2 feet of the cash desk when one man finally sips the last of his hot chocolate and offers help. I pay, grumpily, and the tree is loaded into our van.

Home, and no bicycle outside so we are hopeful that our cleaner has been and gone. I have nothing whatsoever against our cleaner, however she much prefers it if she can have the house to herself, and does a far better job if we go away and leave her to it. Even if she does insist on throwing out my takeaway menus and putting the steak knives in Little Fish's cutlery drawer. But as we open the door, the unmistakable Fox FM jingle runs through the house; lights on, hoover on, our cleaner is here. Has she caught the bus? No, she has cycled, and has chosen to park her bike in Little Fish's bedroom as she thought we were out. Is it just me, or is that an odd thing to do?

Anyway, she cleans, we camp out on the settee doing the Charlie and Lola puzzles for the umpteenth time, she leaves, and Little Fish goes into action restoring the house to its former lack of glory.

And then this. "Mummy, you love me?"
Yes, I love you.
"You love me always?"
I love you always and forever and from before we ever met.
"You love me really really?"
Yes, I love you.
"My bottom singing. La la la parp prump parp pop pop".
Thanks, kid.
And now it is evening again. Mog was not coughing when the bus came, so was able to catch it home again. Where she then coughed and spluttered and drowned, and then went into spasm and cried and complained. And dropped off to sleep, and woke herself up with a seizure. And dropped off, and woke up, and dropped off, and woke up. We're now on the third option as far as safe sleeping spaces are concerned, and she may just be settling. Little Fish is snuggled up in her own bed, apparently asleep until I go to close her bedroom door (that ventilator is LOUD) when I get "You no close door Mummy, you love me". And I? I have had a bath, using the bath salts we were given at the Rosy lunch last week. Lovely. Except they were full of lavendar seeds. Which have now detached themselves from the bath and fastened themselves to my back, like small, sweetly scented tics. I wonder who designed them?

Off tomorrow to stay with friends, so updates will have to wait until Sunday (unless I run into an overdose of uber-geekery and update from their house).

Pray for T, those who do,
Tia

No more Thursdays!

I am starting to take this personally.

Mog woke up this morning after a whole night in her own bed, first in a while. Lovely. OK, so she woke up at 5 rather than 7 but that's a minor matter, and her ceiling light show plus a spot of Norah Jones fixed her up for another hour or so before her secretions got the better of her and she needed to be in her wheelchair. But she was smiling, happy, keen to participate in the whole choosing a hairband thing, and only slightly put out about the idea of being strapped into her chair and maybe bending in the middle a bit.

Little Fish slept in until after Mog's bus had been and gone, then woke up and had a quick bite of breakfast before we trundled off to preschool. So far, so fairly unfraught. Dropped her off and walked home, hoping to grab some coffee before my next commitment. Sadly my visitor was waiting on the doorstep so I had to share my coffee, so we got stuck straight in to the morning's project - emptying the cupboard under the stairs. I live in a flat, so I have no attic, but my upstairs neighbour's stairwell gives us a nice storage cupboard. Full, as it turns out, of hundreds of medium tena slips (Goldie's), half a dozen sleeping bags, assorted bits and pieces of clothing and old wheelchairs (anyone need a Jay 2 back cushion or the black padded cover for a wheeled commode?), old gaiters and back braces, and sewing supplies, and then finally gold dust, 48 cartridges for our giant nappy bin. Cartridges which are no longer made, so our bin has been standing unusable for six months. It has now been recomissioned, and not a day too soon.

People have asked why Little Fish is Little Fish. Here's why:
After we sorted out the cupboard, we put LF's room back together but with the bed in a different position. It's great this way around - the bed finally sits under the hoist which will be useful as she gets older, and she has more usable play space in the middle. Plus all the things which were shoved stored under her bed are now in the cupboard, so her bed can come down to its lowest height, and she can start practicing getting herself in and out of it. Fun times.

So, that was our morning, child free yes but not entirely relaxing. And just as we were finishing up, I was calculating that I would still have around three hours to sit down and enjoy doing nothing but drink Lemsips, when the phone rang. Not school for once, preschool instead "we think LF is poorly, can you come and pick her up please?"

Abandoning Lemsip and coffee (two separate cups in case you were worried) I struck out for preschool and found Little Fish sitting and shaking on her 1:1's lap. Really shaking, very blue, red hot body and icy cold hands. It is Thursday, after all. Get her home and take her temperature, she's reading the same fever Mog had last week. Wonderful.

Ibuprofen, Paracetamol, the Flucloxacillin she's taking for her staph infection (and isn't that supposed to somehow insure her against getting ill with other things? Seems very unfair to have her getting poorly when already taking antibiotics), water and some vitamins, and she perks up enough to watch the teletubbies for a bit. So we pass a reasonably peaceful couple of hours.

And then school rings "Mog's coughing again and drowning a lot, and we're not happy to put her on the school bus". Excellent. Our bus escorts are not trained to give medicines or medical treatment. Most of the time this isn't too much of a problem; we live about five minutes' drive from school, and Mog should be the last child loaded onto the bus and the first off, which gives plenty of time to give midazolam if she starts seizing on the bus. Can't really leave her five minutes without breathing though if she suddenly needs suctioning. So for two days in a row now I've had to pick her up from school. I'm rather puzzled about how it's any safer for me to collect her and drive her home alone, than it is for her to be driven home by a driver with an escort at least able to watch her drown and stop breathing. I suppose it's one of those "Magical Mother" things. That or they've overestimated LF's ability with a suction catheter.

However, we do get home safely, and Little Fish takes a break from Teletubbies to look after her babies. Elmo baby is apparently very tired, so needed to be hooked up to his Nippy ventilator"There, soon be sleeping again baby".

And then the evening comes. I start to get Little Fish ready for bed, and talk her into her Upsy Daisy pyjamas. Get her nearly sorted when the flucloxacillin finally kicks in - turns out that erythromycin bungs things up but my goodness fluclox gets it going again. A change, and another change, and so she isn't quite in bed when our evening carer arrives, with new carer shadowing.

Cue one very overtired, poorly, muddled and confused little girl. Had I known she was going to be poorly, I would not have chosen today to make major changes to her bedroom layout. In bed but "I want you lie down in bed with me Mummy. You sleep in ere tonight Mummy" and major squawks if I shift away from her bed to do anything else.

New carer, very nervous and somewhat overwhelmed. Experienced carer very experienced, but one of Goldie's carers who only sees Mog now when our main carers are on holiday, so not totally au fait with all her care needs. And definitely freaked by the sudden need for suction.

Mog reacting to a combination of very sore bottom, carer not full of confidence, and Mog's own panic at lying flat for a shower, screeching mightily.

Eventually Mog settles, the carers shower, I sit with Little Fish. Both girls settle to a steady grizzle, so I retreat to the sitting room. And suddenly an almighty scream from Mog at which point I throw myself into her bedroom screeching myself to get the carers to get away from my child, stop drying her hair and step away from her. Undo her straps and feed, and carry her through to LF's room, LF screeching too. Carers follow like sheep, despite my "go away" glare. New carer deeply upset that I think she's hurt Mog with the hairdyer, and despite the fact both girls cry louder as soon as either carer speaks or approaches, I have to go into long technical description of muscle spasms and the way Mog's CP affects her.

Eventually they leave, girls calm somewhat, and I gather Mog up to post her into her own bed. Where she twists up like a screaming pretzel again. I give her midazolam as quicker than diazepam. And she somehow inhales it, and is now breathing white midazolam infused dribble bubbles - like very heady toothpaste. It begins to have an effect, not especially helpful at a time when she really could do with having a good cough. But finally she is calm again, leaving me considering the fact that rectal diazepam may be a better option if she can't do this swallowing thing any more (And I know the buccal stuff shouldn't need swallowing, I'm just cruddy at giving it, alright? Who knew half a milliliter could be inhaled that far anyway?). And then finally I am free to return to the hysterical Litte Fish and reassure her that the strange ladies were only there to help and weren't staying and that I wasn't going.

And so I am sitting in that no man's land in the hall, neutral territory between one shallowly sleepy Little Fish who is beginning to cough up wads of goo all by herself, and Mog who is waking up and shaking off the Midazolam and apparently going straight back into extended spasms. Norah and the light show not cutting it this time, I must go and straighten her out.

And now the door is bolted and no one is going to be welcome until morning!
Tia

PS Edited to clarify the fact that I am entirely in agreement with school that it is not safe for Mog to travel on the bus when she needs suctioning - my frustration is not with school but with the policy makers who have decided transportation staff should not be trained to deal with medical emergencies. And with life in general, really quite a lot actually. Forgive me for not making this clearer earlier on; I was rushing because Mog was beginning to grizzle. Silly me for thinking it was just the Midazolam wearing off, she was in fact sitting in a small ocean of poo, and had somehow managed to get her fist in it and rub it all over the bed, not bad for a child with no voluntary movements. Big apologies and a clean up for her and the bed. My washing machine is sulking now.

Five Frustrating Things Before Coffee

Forget six impossible things before breakfast, that's easy.

1. Feline mayhem - no, not catfights, they have all been apparently quite civilised overnight, each finding their own sleeping point and none of them eating the Super Chunks. But one of them who shall remain nameless vomited on my duvet at 5AM. I was underneath it at the time.

2. When unceremoniously turfed off the bed, said cat did not make his way immediately to the catflap, apologising for the inconvenience, but turned to climb back on the bed again, ensuring that with his second puke he caught the pile of clothing on the floor.

3. We went to the out of hours GP last night as Mog's cough appeared to be getting worse again - he had a listen and declared all well. I'm actually happy with that - sometimes the duty doctors just wave a stethoscope in front of her and magically declare her lungs to be full of grot. So to have one who listened careful and then decided she didn't have an infection was great. That's not the infuriating bit. The infuriating bit is getting back home with one grinning "hah, fooled you" little girl, putting said girl to bed and listening to her immediately start wheezing and obstructing and giving great big chesty coughs, none of which she produced for the doctor.

4. Our carer turned up early. It's a petty annoyance rather than a massive grievance, but those ten minutes before she was due I had earmarked for a shower and hairwash. So now I'm sitting here grumpy and grubby, and she is readying the bathroom for Mog's morning routine.

5. Mog is sleeping sweetly, breathing easily, silently, and without any hint of problems. This is possibly more annoying than any of the others - why? Because this is what I needed her to be doing at 9 o'clock last night. And 10 o'clock, and midnight, and 1, all of which times I got to see in either trying to reposition her in bed or finally giving up and putting her back in her wheelchair instead.

Now I can hear Little Fish making little murmurings from her bed, and as she has so far not annoyed or irritated me this morning, and as I have finished my first cup of coffee, she's probably a good person for me to go and cuddle. I wonder how long it'll take before she winds me up too. Perhaps I need an attitude readjustment. Or possibly just more coffee.

Tia