Sunday, 28 February 2010

Doing the right thing

Little Fish has taken to checking up before she does all sorts of things.
Grabbing a box of pens, taking off the lid and about to throw it on the floor, she pauses, looks up at me and asks "Am I doing the right thing?"

Emptying the magnetic letters onto the floor and stirring them into a soup with a stack of photographs, just before adding the prune juice she stops, looks up, and asks again.

I'd love to say this is wonderful, and that on being asked to decide what the right thing might be, or told that it quite definitely is not the right thing to do, that she then stops instantly. Alas, she's still a four year old girl, and after several "OK, Mummy I do the right thing" we still get the "I am NOT wanting to do the right thing." But hey, I can sympathise with that. And somehow, a small child who can tell me she is choosing to do the wrong thing is somehow less infuriating than a child who appears to have no idea why it might not be a good idea to rip up the books, flood the bathroom, and stab her knees with pens until they bleed. I can work with that.

She's making strides, growing. I love it. I could post something about how we might be coming out of this pit of tantrums and temper, except that as I write this, she's sitting in the bathroom screaming at our carer. The right thing to do would be to go and intervene, but it turns out I am not wanting to do the right thing.

Grolly turns one this week. Little Fish decided she needed a Birthday Cake. And a party - a cat party. What does a cat party involve, I hear you ask? Ham and pate and lots of singing apparently. A chocolate sponge cake and a candle, and we had to thank her for having a Birthday.

I took the opportunity to ask Little Fish what she'd like for her own Birthday later this month. "Ummmm, we can invite Grannie and Grandad acos we 'ave not seen them for a long time*, and we 'ave a Cake and candles and we sing and that is all." All? No party? Nope. No presents? Nope. No other food? "We can go to a dinner shop?" Perhaps we can. I might just have to provide a present despite her not wanting one, but I hope she doesn't feel short-changed later by the lack of a party. Unlikely, as she's been adamant about not attending any of her friends' parties for the last six months. I'll not push it; cake and Grandparents and possibly a dinner shop sounds pretty good to me.

Meanwhile, Grolly had a very nice party, even if Goway ate all the ham. Both Grolly and Gotcha think the best gift ever was yesterday's cat hole, even if they haven't quite got the hang of rain yet.

*that'll be since last Sunday, when we had lunch with them!

Saturday, 27 February 2010

Just Because

So, today , as I cleaned the third cat turd from the bathtub in as many days, I decided that things really couldn't carry on as they are. No, we didn't rehome the cats; I went to the petshop for a catflap to fit our current cat hole. They didn't have an exact fit, so I settled for a large cat/small dog flap, stocked up on a few other essentials, arranged a second mortgage to pay for it all, and left the house.

We came home, and I opened the catflap box to discover the instructions consisted solely of indecipherable little pictures. And a circle which I needed to cut out of the door. Our current cat hole is U-shaped; I'm not sure why a U-shaped flap needs a round hole, but hey ho, I have a saw and I'm not afraid to use it.

Unfortunately I'm not especially competent at using it either.And after a lot of huffing and puffing, and a fair bit of polystyrene blowing across the garden, I decided perhaps fitting cat flaps not my forte, and that I could probably live with a cat hole for a little longer. So, I left the hole unblocked and waited for the cats to discover it.

And they did. Grolly was the first; she went out, ran in circuits around the garden, sat down in the wet grass, rolled a few times to get thoroughly muddy, and then bounded in to sit on my lap (something she never does) to tell me all about it. Great. One cat hole, one wet and muddy cat, and now one wet and muddy lap too.

Gotcha went hunting next. And decided he really was a Forest Cat. A very happy, very stuck, Forest Cat.
Joy.

So after he'd cried for rescue, I scrambled up after him and tipped him out. Wondering as I did so why I was letting a cat not known for his ability to groom himself mix with moss, lichen, and mud. I'm still thinking on that one.

But, after their tree adventures, they both bounded around the garden for another twenty minutes, looking more like excited puppies than cats, sniffing everything, running back to check we were still around, then bounding around and over and under things again until the clank of dinner bowls indicated there might be better things inside.

The girls had a good time too.
Little Fish beetling in and out to report on progress and tell tales, Mog outside for a while and then inside to plot evil deeds.
And now both cats are sitting on the windowsill, watching the leaves blow around outside but no longer desperate to chase them. No signs of outdoor widdles either, but hopefully they'll discover this pleasure shortly.

Tia

Friday, 26 February 2010

Attack of the FluffMeister

You'll be glad to know we did in fact all wake up this morning. Some of us rather earlier than we might have chosen. And as I stepped out of my bedroom, my foot was grabbed by a Lion Gotcha-cat living up to his name in not quite the way we intended when we named him.Ow!
Tia

Thursday, 25 February 2010

Do you promise?

Little Fish is into promises at the moment.

"Do you promise to pick me up from school, Mumma?"

"Do you promise you love me, Mummy?"

"Do you promise I will wake up in the morning?"

I don't like that last question...

So we had a talk about how God is looking after her and watching over her all night long, and that He will keep her safe. And she decided "I like God and Grandad, goodnight, Mummy."

And now she's all tucked up and asleep, and I'm all awake and worried that she might not wake up in the morning.
Tia

Tuesday, 23 February 2010

Round and round in circles

Mog's muscle spasms cause her pain and discomfort and mean she can't sit in a chair but has to lie down as her middle won't bend. Lying down causes increased risk of aspirating secretions and then increased risk of chest infections. Spasms are treated with diazepam. Diazepam relaxes the muscles, meaning fewer spasms, more floppiness, and more sleep. More sleep with more floppiness means less coughing and more secretions building up in the lungs. More secretions mean more chance of infection. They also mean more sleepiness. Solution? Remove the diazepam. But withdrawing the diazepam causes increased muscle tone, which causes further muscle spasms...

Having too many secretions and being doped to the eyeballs results in being sent home from school. Being sent home from school means having to walk with me to pick up Little Fish. It is sleeting. Being overly floppy means needing to be slightly reclined in order to not flop one's head down and obstruct. Which means inhaling sleet. Which means increased risk of chest infections. Etcetera.

So, in an attempt to control the totally uncontrollable, a friend and I have come up with a new concept. We'd like to suggest all ceilings should be coated in velcro. My choice would then be to throw all soft toys, odd socks, spare blankets, cats and other fluffy things up there thus giving me beautifully clear and shiny floors and the brief illusion of a clean house. She'd prefer to stick her children up there - which would also have the clean house effect going nicely.

I think it's a winner, how about you?
Tia

Monday, 22 February 2010

Normality.

"So, how's normality after your holiday?" asked my friend earlier this evening.

My response was somewhat delayed, busy as I was frying waffles for fifty girls and their leaders, and arbitrating the great maple syrup debate. And as I reflected on the possibly that frying waffles for fifty was not the most normal of occupations, I considered the rest of the day.

The small child sitting next to me as I was on the telephone, singing very loudly "Bob the Builder, HE CAN'T FIX IT!"

The cat who has decided the front door is scary and now prefers to come and go through the sitting room window.

The small child sending texts to an imaginary (I hope) hippopotamus, inviting said hippo to go out for ice cream in Grannie's new yellow car.

The other two cats, belting up and down the hallway, chasing the wrapper from a bisacodyl suppository.

The online grocery shop, which included 29 items, 27 of which were cat-related.

The small child deciding "You are the baby and I am the Daddy. Right, WAKE UP BABY!" before beetling off to find her baby doll, who is now officially the Mummy. And the child stripping said doll, and attempting to persuade the small cat to wear a pink cardigan. And the cat not cooperating but not removing child's arm or running away either.

The larger child still adamant that Norah Jones is the only acceptable music to listen to, but conceding Matt Redman as a barely viable alternative. And the younger child now singing "Blessed be the name of That Door."

And then looking around the church hall, as those Guides who were not currently eating waffles or attempting to fill every little dimple in their little waffly heart with the perfect mixture of chocolate spread, sugar and lemon, chased each other up and down with chopsticks for the great noodle relay.

And I realised once again that our normal is not like other normals, and I didn't have any idea how to answer my friend's casual question. She probably regrets asking it now!

Tia

Sunday, 21 February 2010

Wheeling away



The power of blogging. I posted this plea for help/general moan a couple of weeks ago. And someone replied, suggesting I tried contacting HMS Mobility. Thank you so much for the suggestion! HMS did some research, and discovered Otto Bock spare tyres were listed at £149 each. Given the original price of Little Fish's wheelchair; £960, that means, the tyres - not the wheels, just the tyres - were 1/3rd of the total price. Ouch. Thankfully, although I'd have paid that to get Little Fish moving again, HMS also investigated other options. I posted Little Fish's wheels to them, they sourced some super thin racing tyres, fitted them, posted the wheels back, all within a week and in time to take the chair on holiday, and all for half the price of an officially branded tyre.

Very impressed with the service we received, lots of reports throughout the week about the progress the chair was making, and then to have the wheels couriered back on the Friday ready for our trip was just wonderful. I did then have to refit the wheels to the chair myself - and they aren't the simple quick release type - but spanners and allen keys and a bit of elbow grease and I got to feel all technical and important and self reliant. Until I realised these tyres were rounder than the official tyres, and so they were bumping up against the brakes.

I did, for a few evil moments, consider the advantages of having Little Fish effectively governed by having to wheel with her brakes on all the time, but decided it was probably not the kindest thing to do to her. So, wheels off, investigate the brakes, discover I can adjust the entire seat and lift it up a notch. This is good news; in two years it's stayed the same height, I hadn't realised I had space to make it bigger. Suddenly this chair may just do for the next year or so too.

Lifting the seat does not however sort the brake problem out. I examine the brake blocks, and discover I will need a very small, very flat, spanner to loosen things up there. So I shelve the idea and let Dad come for lunch on Sunday. He eats, we look at the chair, he hits the errant brakes with a hammer, and everything is running smoothly again.

Hurrah for HMS and for Grandads!

Tia

Friday, 19 February 2010

Swimming in the snow.

Yesterday we had a midafternoon swim. Staggering gently into the salt baths, we were somewhat surprised to be facing a steady stream of swimmers heading towards the steps from the opposite direction. We pushed our way through the screen and outside, where we found ourselves swimming in warm salt water, gathering snowflakes in our hair. Lovely.

Mog and I headed back inside whilst the others, madder, braver, stayed outside until nearly blue before coming back to warm up again. Little Fish and Mog both cuddled up to me in the water, and whilst Mog fell asleep on my shoulder, M and S braved the outdoor rapids. There are times when I like having children who need me.

We three got out, those two stayed in, and we all met up at the villa after the girls had made use of their newest creations.These their early afternoon (and only paid-extra) activity; paint your own umbrellas and ponchos. Very nice.Back to the villa for a quick snack and a rest before a superbly huge and tasty last meal; Little Fish ate until she was almost round, and then rolled about on my lap before begging for bed. A beautiful way to finish our holiday.

A quick tour before we leave the villa - Mog's extremely clever and special adapted bed.
In an extra specially huge bedroom with wide door and a level access fire escape. Opposite a wet room bigger than our bathroom, with a beautifully powerful shower, and oodles of hoisting space for anyone who might need it.
Two more, more averagely sized bedrooms, and the Center Parcs standard interior; open plan dining room, sitting room and kitchen.
Nicely sociable, very comfortable, and a lovely patio outside full of wildlife. I think we had the best villa in the park; certainly one of the closest to the pool and other facilities. And it's amazing how the company manage to pack that many visitors into that many buildings without it feeling crowded.

Would we choose Center Parcs for a holiday again? Definitely; it's now Friday evening and I am far more relaxed than usual by this time after a week's break from school. It wasn't perfect; we were warned before we left about the problems they'd been having with theft, and we were warned again on arrival, and again later that evening by a security man coming around to check we had double checked the windows. Interestingly, one of the fire escape windows had been very subtly left open but adjusted to look very securely shut; making me wonder whether it had been set up deliberately for easy access during the day when we would be out. But that, and the steps into every single pool (for some reason the ramped access to the main swimming pool was roped off and out of bounds, as was the disabled loo on one day), were two minor hitches in what was otherwise a rather jolly splendid week.

And just as well it was relaxing; as I came home to canceled care, a cold and somewhat damp smelling and dirty house, a child telling me she is very poorly but doesn't know where except maybe in her knee (which she can't feel anyway), a cat having been put on a course of tranquilizers by the vet, a letter from the wheelchair service saying that due to them being too busy, they can't give us an appointment to adjust Little Fish's wheelchair and she will just have to not grow any more until she gets further up the waiting list, and other little bits of life just floating around, reminding me why we needed the holiday. Welcome home!

Tia

Thursday, 18 February 2010

Who me?


Little Miss Innocent on being asked to pose to show off her new tray, tyres, and top.
Tia

Lazy Days and Greedy Geese


Sitting peacefully yesterday morning, I was surprised to hear an insistent knocking at the back door. I turned around, wondering who might be disturbing us and why they hadn't come to the front, and found this posse! Headed up by the goose, they were demanding their breakfast. Whilst the lesser birds were happy to gather their largess from the ground where it had scattered, sir goose here had finer ideas and honked and tapped insistently until I allowed him to take his share directly from my hand. Later, we pushed Mog outside with a pile of crusts on her tray, but none of them were brave enough to try that.

It's not many places you go where the shops are signposted retail therapy. Still, we made the most of it, and Little Fish is delighted with her new fleecey top. Mog had a quick look but decided to conserve her energy for swimming later.

Home for lunch ("No, Mummy, not home! It is our 'oliday 'ouse), and then Sister Act for the small ones as we larger ones digested our dinner. A swim - Mog wanted just the warm salt pool today, and Little Fish wanted just to be wherever I was, and I needed to be with Mog, so we all had a nice long floaty soak. And then showers - and many evil thoughts for the faster people who kept diving into the free showers in front of me as I stood with Mog on one hip slithering towards them. Only one disabled changing room being used by families who believe having young children is a disability (I can understand this when the accessible room is the only one big enough for more than one person, but here there are at least a dozen large family changing rooms together with more general mixed changing and even more single sex changing. There are only two disabled changing rooms and they're the only ones big enough for wheelchairs. Please leave them alone!) so we slipped into the other and dried and dressed and discovered the entire afternoon had disappeared.

Fish and chips for Little Fish with drinks for the rest of us, then home and two girls bedwards followed by a takeaway for the rest of us. It's an interesting takeaway; jointly Indian, Chinese, and Pizza. We had pizza on Monday, Chinese last night. It was alright, but I am considering coming back here just for the pizza, so if anyone's taking notes, go for that!

Mog's new feed pump started screaming with an F-05 error. I'm not losing six hours out of our holiday to get a replacement; I've stuck it on charge and hope that'll sort it. We did bring the spare back up, but I'm scared to try it - 7 pumps in less than a week feels excessive.

And now I must go and start the day. Sleeping children, sleeping friends. Beautiful. But feeds and meds need sorting anyway, and the geese are gathering outside the window.
Tia

Wednesday, 17 February 2010

Our glorious natural world

Yesterday, I woke up, drew the curtains, and saw a heron, half a dozen geese, same again of ducks, a coot and a moorhen (we think - one had a white beak and one a red, were we right?), two rabbits, a handful of squirrels, a mountjack deer (muntjack? Not had my morning coffee yet), and some goldfinches. By the time I'd grabbed the camera, I had a blurry hero , and S managed a deer's rear end.

So, today I was prepared. Camera in hand (and switched on too, be impressed given above-mentioned lack of caffeine), I quietly drew back the bedroom curtains. To be met with this:


The best laid plans...

A nice day yesterday; visiting friends and an instant playmate for Little Fish. Some fabulous hot salt baths which pickled us all nicely, pancakes for Shrove Tuesday, and more playing. Mog less happy, lots of twitching and some very bubbly breathing in the evening. Delayed effects from the previous night's diazepam? Too much pool water? A cold? Pass. We'll take things easy today and see how she goes.

We must have been in the water a long time; Mog's feed pump was still running when I went to bed, and kind friends switched it off for me at 11.30 or so, all without me stirring. Oops. The morning started with seizures, but morning meds and the next feed seem to have calmed things down again. She's now snoring, and Little Fish Is still out for the count. Peaceful mornings, one of the very nicest holiday treats.

We have the important things set out for today - supplies for a cooked breakfast ready and waiting in the 'fridge, soup on standby for lunch, swimming at some point during the day, and I expect the rest will fall into place nicely around that.

Odd to be morning blogging, but nice to be sitting chatting in the evenings.
Tia

Tuesday, 16 February 2010

The letters I'd love to send

Gathered over the past few weeks.

Dear Disney,

"Girl" and "World" do not rhyme. Nor do "don't stop me" and "paparazzi". And "us" does not rhyme with "trust" either. I could go on, but I wish you wouldn't.

*********

Dear Bob,

I last saw you on Monday, 16th Feb, 2009. You said you'd be back later that week in order to finish the job you started in 2006. You never turned up. You have left me for another twelve months without finishing this project. You have now just left me a text message stating that you "are leaving the building game" and wish to present a final invoice, an invoice in which you plan to include work done back in 2006 and for which I paid at the time, and work which I am still waiting for you to complete.

Why?

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

Dear Little Fish,

I don't care if all the other children are doing it, I don't care if the staff are doing, I don't care if it is easier and quicker. Lose the glottal stop. It's "Button" not "Bu' un", and "bottom", not "bo'um". And no, making me repeat it twenty times so you can hear it properly isn't "really funny". OK, well, probably, it is a little funny. But please, stoppit! (Apart from anything else, your speech isn't all that clear at the best of times. You need to enunciate the bits you can, or people won't understand you at all).

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

On a related note, Dear Teacher and school staff,

I'm sorry Little Fish now thinks T is the first letter of Bottom and Button. "Tuh, tuh, tuh for bottom" is probably going to annoy you and I hope she's forgotten it by the start of term.

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

Dear everyone else,

Sorry that I'm now going to be overenunciating every single word for a while in compensation.

*************************************
Dear Grolly,

Please, please, stop weeing on everything. Why won't you use the litter tray? For a while you refused the litter tray but peed handily just beside it. That's annoying, but I can live with it. Weeing on the dirty washing is also annoying, but does at least provide me with motivation to keep the laundry basket empty. But so far today that's been one sheepskin rug, one cardboard box, one hot water pipe, and the blanket Little Fish had put down for two minutes before wrapping her baby doll in it.

I don't want to try to get you rehomed; you're a beautiful lovely gorgeously friendly and sociable cat. And Gotcha would be devastated if you went; he already cries when you go out of his sight for more than a few minutes. So please, if you won't use the tray, at least find one relatively easy to clean spot and stick to it. Oh, and whilst we're at it, please use the tray.

Thank you, that will be all.
Tia

Winning the holiday lottery

We were, amazingly, all packed up and ready to go by 11 am. Which was both impressive and annoying, given the fact we weren't leaving until after lunch. And as our holidaying friends were traveling with us, leaving early wasn't really an option. What's a family to do in this situation? We dropped the cats to the cattery and went to McDonalds.

Friends collected, their luggage shoehorned into our bus (not quite a pantechnicon "just" a Mercedes Sprinter - space for three wheelchairs to be clamped in plus three passengers on seats and a driver. The three of us usually just fit, provided we share a suitcase), farewells exchanged and we were off.

The upside to roadworks on the M25 is that counting Diggers kept Little Fish entertained for hours. The downside is that we were on the M25 for hours for diggers to be counted...

But we got here at last, and and now we're set to stay. One Comfort Plus (adapted) Villa in the middle of a very woody forest. Surrounded by 1000 other "villas", all yellow prefab concrete things, all somehow disappearing into the woods and giving the impression, as long as we only look out of the back windows, that we are alone in the woods by a semi-frozen lake. Lovely.

Pizza last night and an exhausted collapse into bed to follow. A phonecall from Mog's neurologist suggesting we start to swap her baclofen for diazepam. She slept very well last night!

And what did we forget? Matches. Armbands. And senna. All of which is entirely replaceable. We also forgot the bookings form with all our confirmation details on it, but only got as far as the cattery (still in town) before remembering it. So I'm thinking it doesn't really count. I just smiled as I wrote this, and my top lip split, reminding me I also forgot to pack Vaseline. Parcmarket, here we come! But I'll have a cup of coffee first.

Tia

ps thanks, Becca, I'm printing your list for future reference.

Monday, 15 February 2010

Holiday Lottery

The more organised and capable parent probably packs for holidays several days in advace, gradually adding to the piles as clothes are processed through the laundry, carefully ensuring an adequate stock of medications and other essentials, and taking steps to ensure the house will be in a welcoming state on the family's return.

Me - well, I get rather flustered about the lunch guest who turned up with 20 minutes' warning; thankfully enough time to cook up some sausages but I think one chicken breast between four of us might have been better arranged. And whilst the more organised Mum probably has a house decent enough for people to see for the first time, I personally spend 20 minutes running around shovelling everything out of sight and trying to sweep up the cat litter which has inexplicably spread throughout the house.

Which means I then spend the afternoon trying to find the odd socks which have now been scattered far and wide, and then spend the evening videoing Little Fish rather than making a start on the packing.

So, I'm off to pack now. And to relieve the monotony, I'd like to invite you to join me in this packing game. I have in the last twelve months forgotten to pack various different medications (one per holiday), dressing gowns (less important but chilly), any clothes at all (Mog enjoyed shopping), catheters (oops), feed supplies, chargers, and on one occasion, a wheelchair. So, your predictions for what I may have forgotten would be very welcome.

We leave at lunchtime; huge helpful elf points to anyone who mentions something I have forgotten before that time and therefore reminds me before we go. And after lunch? Smug points for knowing you were right (with helpful elf points if you can find a solution which doesn't involve going home or spending the entire day queuing in a pharmacy somewhere).

Tia

Sunday, 14 February 2010

Mamma Mia!

Just another Sunday evening...
video
Pity Mog, who is having a shower in the same room. Current variants as I type this are "Mamma Mia, here we go again, my my, oh I have a sister" and "oh my, now I am a sister". With our carer being ordered to wiggle and shake her bottom in time with the music. I'm really not convinced the mike was a good present!
Tia

Saturday, 13 February 2010

Pumps

So today Mog's feed pump decided to die on us, thankfully not until we were in the checkout at IKEA but still leaving her without feed for the hour's journey home. Got home, unloaded the girls from the bus, and went to swap Mog's pump for Little Fish's pump which was waiting, fully charged, for just such an emergency.* And discovered that Little Fish's pump not only had a wonky battery cover, something it's had for a while, but also had a big crack across the bottom of it.**

So, I phoned the company which supply them. Spoke to the chap on duty, who agreed that Mog's pump needed to be replaced (F-02 error, for those with similar pumps), and told me I must not under any circumstances whatsoever connect or attempt to switch on Little Fish's pump with the cracked housing. Took my number and promised to get someone else to call me back.

Meanwhile, Mog still needed feeding, so I was pumping her feed through manually , trying (but failing) to keep to a slow and steady rate roughly equivalent to the 105mls per hour she's used to. An interesting task, especially when combined with our more usual evening activities - getting girls ready for bed, sorting the house, detangling the cat's neck fur...

Pump service access woman called back and suggested I tried the cracked pump, as "it probably wouldn't do anything". I suggested this probably wasn't the best plan, given the first chap's absolute veto, and she agreed to send out replacements.

The replacements have just arrived. Bizarrely, the delivery chap decided to drop them off with my neighbour and post a piece of card through our doorway telling me he'd done so. I manageed to catch him; he managed to retrieve the two cardboard boxes, and I swapped them for the two defective pumps.

He left, I closed the door, and opened the boxes properly And lifted out this pump
With what appears to be a light coating of grot on the base of the charger, although the pump itself is clean.

And this pump
Which is rather less clean.

And this one
Which is quite revoltingly filthy.

It was nice of them to send three - I'm assuming that's one for each girl plus an official back up incase we need it in the future. But I really hope they have actually sent fully working pumps, not just the first three they found in the cupboard which have been sitting waiting for repair themselves. I'm not convinced that a fully serviced pump would still be covered in milk drips though.

I've just turned them on. The first pump is set to deliver at 133mls/hour and has a dose set of 400mls/hr. The second is set to deliver 500mls at 166mls/hour; it has already delivered 32 mls of that, and is beeping low alarm at me as soon as I turn it on. And the third has a dose of 400mls to deliver at 60mls/hour. Since one of the more annoying features of the newly serviced pumps is the fact they are set to deliver 0mls at a rate of 1ml/hour, I'm thinking these are quite possibly not in fact the right pumps. You know what? I hope these aren't the right pumps - I don't want to think that a company, delivering medical equipment to extremely vulnerable children and adults, simply doesn't bother to clean them first.

I'm off to charge all three of them, and hope that one at least will do the job for us tomorrow. Pass the Dettol.
Tia

UPDATE 8AM. Having charged all three overnight, I took one off charge, hooked it up to Mog's feed, set it to run, and listened to the extremely undulcet tones of an F-04 error. I switched it off, ears ringing, and took the second pump off charge. Hooked it up to the feed, set it to run and listened to yet another F-04 error.

I've just set the third and final pump up, having spent last night scraping someone else's lactulose and epilim off the charging unit. No alarms yet.

UPDATE 2PM. I phoned the company who were apologetic and assured me there were failsafe procedures designed to prevent this ever happening. I can't help feeling they're not actually failsafe if they managed to fail, but there we go. Apparently "the courier must have picked up boxes from the wrong side of the depot." I'm not convinced that's failsafe. The third worked long enough to feed Mog until the replacement pumps turned up just now, two shiny clean pumps in shiny clean boxes, fully charged and with nice shiny paperwork. Much better.

*For I am, just occasionally, staggeringly organised like this.

**For, alas, even when I am staggeringly organised, things have a tendency to go wrong.

Friday, 12 February 2010

Lazy afternoons

Some
days
you
just
have
to relax

and go
with
the flow.
(now what's for dinner?)
Tia

Thursday, 11 February 2010

T-shirt, take two

For Mog this has been the year of the sock. Many socks, many different fluffy collar covers from many different people. She's loved it. Parcels from Japan and all over the UK, links to websites, and now she has at least one pair to match each outfit and a good half dozen which coordinate with her school uniform.

And Little Fish has been very gracious towards her big sister with all the new socks. She's helped open the parcels, she's stroked Mog's cheeks with them so she can feel the softness of them all, she's helped to change the ones on the collar to keep them all matching. And. lest you think she's some kind of sanctified ideal child, she's also stropped about the fact she can't wear them herself, done her best to rip some of them up, refused to allow carers to strap the collar in place, thrown things across the room and generally shown her less pleasant side too. She is who she is.

This month though, it's been her turn. First there was this, courtesy of Tina and Rosie. And today another parcel. A convoluted journey from Cumbria to the Isle of Wight, then inadvertently to Witney and Surrey before heading back up to Cumbria and finally down to us again.
She does like it; she stripped off after school in order to wear it.
She just doesn't feel like smiling for the camera today.

Thanks, S and M!
Tia

Wednesday, 10 February 2010

Weather the weather...

Whether the weather be hot
Whether the weather be not
We'll weather the weather whatever the weather
Whether we like it or not.

And it's or not at the moment.

Yesterday I left the house in sunshine, and in the ten minute walk to school I found hail, sleet, snow, and rain. And a very unnecessary lazy wind.

Today a fine fresh morning; I cracked the window half an inch to blow the cobwebs away (that's my kind of housekeeping). Having cleared out a pile of clutter from my bedroom, and impressively managed to unpack two boxes which were apparently untouched since our house move (2003?), I sat down with my lunch and a book. And the wind blew, and suddenly a fine line of snow hit me across the head and drizzled over my potatoes like a line of expensive rock salt.

We were sent a tree before Christmas. It lived for a month in our cloakroom (this being the coldest room in the house) before the ground thawed sufficiently for me to be able to dig a hole and bury the roots. It was then promptly buried in three inches of snow, and has been subject to alternate flooding and freezing ever since. Despite that, it appears to have grown three inches in the last three weeks. I'm a little scared - the tree info said it grows to 9 feet, Wiki says 22 yards. At this rate it looks like being house height by Autumn, and I'm thinking the neighbours possibly won't be too happy about that. On the plus side, if it survives this weatherly weirdness, I guess it is indeed the hardy easy growing model it's supposed to be.

I have three different weather sites up at the moment. Our town is supposed to be sunny and cold, snowy with sleet, or cloudy with much rain. Can I take the first option please?

Tia

Monday, 8 February 2010

Smug

This evening I am feelimg rather pleasantly smug. My floors are clean (thank you, Scooby), my sitting room is clean, my laundry mountain is a molehill and the clean clothes are all put away. There is no washing up left in the sink, the girls are both asleep, the cats are all fed, and Little Fish and I both had real live fruit and vegetables as part of our evening meal. We only have four extra pints of milk in the 'fridge, there are biscuits in the tin and the medicine cabinet is fully stocked.

We have a new plan for Mog's feed, Little Fish's nuerosurgeon called to say the shunt unravelling in her peritoneum is normal and nothing to worry about, we have a call in to Mog's neurologist about her spasm, and all our extra medicines have been ordered. We have a week without hospital appointments, I have remembered to send in sufficient supplies to school, and my only medical task at the moment is to sit and wait for letters and phonecalls to arrive.

Little Fish's wheels have made it to the wheelchair spare parts man; the tyres he thought he'd found will be no good but he is hopeful that a working pair will be with him shortly, and that LF's wheelchair will therefore be back with us by Friday, so available for us to take on holiday on Monday. I have requested a respite session from the hospice, spoken to a friend and posted some important documents. I have also discovered HMRC may owe me a tidy sum of money, I've had some potentially exciting news, and our Guide meeting was actually fairly excellent despite missing 1.5 leaders.

All in all, a pretty excellent, tick lots of things off the list kind of a day.

And as I write this, I realise I forgot to book an inco supply collection, missed a small but important drug off the repeats request, forgot to buy cat litter or holiday fish pellets, and forgot yet again to get the right batteries for the doorbell. Best not to get too smug then!
Tia

Sunday, 7 February 2010

Move along please, nothing to see here

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Really; nothing to see! A nice, gentle day. Church, lunch, skype calls to Tanzania, home, tea, and now bed. But since I know people worry when I post nothing at all, I thought I'd post almost nothing instead.

Night!
Tia

Saturday, 6 February 2010

Winter Olympics, Brownie Style

Flames, flowers, Olympian hoops and of course, a podium.
Setting the scene; no snow outside so the ever-resourceful Brownies turned to other materials to make snowmen
and (not photographed) snowballs for various snowball pitching games. Not official Olympic sports perhaps, but definitely very necessary background activities.

International banquest with interesting results; I'm not convinced I've seen anyone dip sushi into a cheese fondue before, but I'm told it "wasn't bad". Sorry, J, but I shan't be repeating your experiment! Polish Pretzels definitely more of a hit, and Greek biscuits, French pastries, and Israeli grapes dunked in a Belgian chocolate fountain hugely popular.

Today's more official sports included curling (dusters on the feet, a pair of brooms to sweep and a tennis ball stone), figure skating (more dusters to the feet and much hand waving), and Mog's own favourite, the Bobsleigh
To others this might indeed be a cardboard box on a skateboard, but to Mog and her crew this was a top Bobsleigh. A slippery slope (check out those dusters again!), a speedy dash across the hall, and a heated competition.

video
I'm not sure I'd be brave enough to try it with the Guides!

Tia

Friday, 5 February 2010

Scooby Blue

Introducing the newest member of our team.

I'm tired of working with an agency who either sends us less than fantastic cleaners who stay forever and accomplish nothing, or outstandingly wonderful cleaners who then leave after just a few weeks. I'm tired of showing people how to use a mop (dip it in a bucket of warm water with some kind of floor cleaning agent in it, squeeze it out, rub it along the floor, repeat), where the cleaning supplies are kept, why it's not a good idea to use the urine bottles to rinse the draining board.

So, I'm trying something new. Our newest addition to the household. She doesn't need gloves and she doesn't use bleach, she doesn't switch the radio from 4 to 2, she doesn't want to spend hours telling me all about her chilblains or her children, she rarely lets the cats out, and she's never late. She's totally flexible about her working hours, and just requires a few minutes TLC at the end of her shift. She doesn't move the furniture, but she's excellent at getting down behind it, under beds, she even manages to squeeze herself under the kitchen table. And she must be picking up an amazing amount of grime, the colour of the water when I pour it away for her once she's finished (sadly she's too short to reach the sink.

Now, she doesn't clean the bath or the toilets, she doesn't fold laundry and she doesn't change sheets. She only cleans the floors, but she'll happily potter about cleaning them for an hour or so at a time, several times a day if I ask her nicely. She'll concentrate her efforts on just one room if I shut the door and leave her to it, otherwise she'll meander through the house, twirling and bouncing and happily slurping up the grime.

Unlike our other cleaners, she's actually resident. She's made a home for herself in a quiet corner of the kitchen, and when she's finished with the floors, she sings a little song to remind me to put her back in her comfy spot. She's a little shy; preferring to stay under the table when she's resting, and not wanting to stay still long enough to be photographed when she's at work. But I did manage to get this shot as she pootled past my chair, and so it is with the greatest of pleasure that I introduce you to our very own robot, Scooby Blue.
Tia

Thursday, 4 February 2010

A really rather rubbish day

Yesterday, we had a hospital appointment. The carpark was full, so we pulled into the very last twenty-minutes-only-no-longer-we-don't-care-if-you-have-a-blue-badge-and-it-takes-you-twenty-minutes-to-get-out-of-the-car slot and hoped for the best. We unloaded, went up in the lift, and fought our way through outpatients to reach reception, where we were greeted by name and invited to take a seat. Three minutes later, the consultant came to us, we followed him to his room, had an examination and a quick treatment, and were out of the door with supplies, instructions for the future, and smiles all round. Back down to the bus via the cafe, and on our way again within 30 minutes. Excellent.

Today, we had two hospital appointments. A different hospital, two girls with two different doctors but the same speciality; policy having prevented one child being referred to our surgeon of choice despite her two sisters seeing him at the time of first referral.

We arrived in good time, had a choice of several parking spaces (almost unheard of!), unloaded and presented ourselves at outpatients. Where I was handed an x-ray request for one child. I asked about the other child's and "the doctors haven't looked at all the notes yet". When I pointed out that I really didn't want to have to queue in x-ray for an hour for one child, then come back, collect the next x-ray form, queue in x-ray for another hour, the receptionist looked confused, but invited me to take a seat in the main waiting room until the second x-ray form was ready. It's never a good thing when you turn up for an early afternoon appointment and there are already no seats in the waiting room. So we stood, and paced, and pottered for an hour, at which point I went back to the receptionist. I asked her whether, if the second child turned out not to need an x-ray at all, she would be told this, in which case we could simply go and get the first x-ray done.

"Oh, if you don't need an x-ray they'll just call you through." I pointed out this wouldn't be terribly helpful, as the second child's appointment was an hour after the first child's appointment, and as we could then be waiting two hours only to have to go and get an x-ray for the first child after all. She looked confused, but disappeared, returning five minutes later with a nice pink x-ray form.

Round to x-ray, by now already late for the first appointment, but with a nice note on the board informing us that all clinics were now running an hour late anyway. I hand over the pink slips, and am invited to take a seat in waiting area two. We arrive at waiting area two, which is the children's waiting area, where we make the delightful discovery that "improvements" to the waiting area mean it is now no longer possible for any child in a wheelchair to access the children's toys or books. We line up against the wall, disgruntled, and Mog spends the next twenty minutes kicking the child lined up against the new partition wall opposite her. Joy.

A clued in x-ray technician arrives, and views the stack of disabled children waiting for x-rays; the doctors' decisions not to review the notes until halfway through the clinic having created a beautiful backlog in the x-ray department. After checking with me that the girls really truly won't be able to stand for their x-rays, she takes pity on us and we skip the queue. Hurrah. I avoid the other parents' eyes as we slip into the room.

Two girls taking it in turns to strip down whilst I carry them about wearing a giant lead apron. We arrange them on an x-ray chair, I arrange myself out of the shot, the machine whirrs and clicks, and we repeat the process with the next child.

Eventually we are finished with the x-rays, and we move back to outpatients to wait for the doctors.

Still standing room only; there's a baby clinic running and an adolescent girls with scoliosis clinic, and the usual stack of more generally wonky children. Finally Mog's name is called and we are escorted through the waiting room and into a consulting room. Except that we aren't; the doctor takes one look at the broom cupboard he has to work with, and takes over a larger room next door with no computer. He disappears into the room next door to check the x-rays, and a nurse comes into the room very annoyed as this is her baby clinic room and she now can't access it. Who decided the baby clinic should have the largest consulting room and the doctor seeing all the children with wheelchairs should have the broom cupboard? Surely by their very nature babies take up less space?

The doctor returns, and squirms his way along Mog's spine. He says it's fine. I say it's worse than it was, that she is having a lot of pain and ridiculous amounts of spasm, that it is taking two of us to fold her into her wheelchair in the morning and that we are having to knock her out with diazepam at times. He tells me she needs a proper wheelchair, then looks at the wheelchair she has and agrees it is a proper wheelchair. I point out she has warped it from the force of her spasm, he agrees, and tries to say goodbye. I ask him what we are going to do, he says we don't need to do anything. I ask him about the pain and the spasm and the suffering, and he says she doesn't need surgery. I reply she wouldn't be having surgery anyway, but ask him what we should do instead. Talk to the neurosurgeon about a baclofen pump, apparently, but there are funding issues so she probably won't qualify. But she doesn't see a neurosurgeon. Oh, well talk to her neurologist. But we aren't seeing him until June. Well talk to him in June and ask him to refer her. But what do we do until June? Oh, keep giving her the diazepam. But that knocks her out and means we can't give her her emergency seizure meds. Oh yes, well, never mind. We'll see you in a year, you speak to your physiotherapist, now goodbye. And the doctor walks out.

I pack up, reinsert Mog into her wheelchair somehow, reconnect her feed, and vacate the room. This whole conversation has been listened to by another doctor who does not introduce herself or speak at all. At no point has anyone made eye contact with Mog or talked directly to her, or acknowledged that pain, screaming, spasm and changing body shape might in any way be anything we might want to treat somehow. And throughout the whole process the baby clinic nurse has had her face glued to the glass pane in the door, scowling at us to hurry.

We return to the waiting room, where complete strangers take one look at my face and rush to offer me their seats. I am too angry to sit down; we have been waiting for this appointment since September, I have not been given a moment to discuss any possible ideas for treatment - even if my ideas were barking mad and totally inappropriate I would have appreciated the chance to mention them. We've missed an afternoon of school and caused Mog more spasm during the x-rays and examination and all so the doctors can walk away and tick a box somewhere which says "child seen".

So we wait, and pace, and finally give in and sit down. Two hours after her appointment time, Little Fish's name is called and we see her surgeon. He sits us all down in his room, pulls up her x-ray from last year to show me, and then puts this years' x-ray next to it. It doesn't take a medical mind to see there's a significant difference. He measures the angle, more to humour me than for any purpose of his own; last year it was 19 degrees and this year it is 26. Not a huge difference. And less than Mog's. But significant and he thinks it will cause problems. He strongly suspects Little Fish will need surgery - in fact it is as good as stated that surgery is inevitable; it is simply a question of delaying it as long as possible. The earlier she has her surgery, the shorter she will be as an adult. So, he will refer her to the orthotics clinic and we will take her to be measured and then fitted with a body brace.

He's a busy man, his clinic is running two hours late, but he spares a few minutes to say hello to Mog, who he has known since she was a baby. He dictates his letter in front of us to ensure he has the correct details for her various doctors and therapists. And then he escorts us all back to the waiting room with a smile. Total time taken in consultation, probably not much more than Mog's. Total time spent during that consultation actually speaking to us; the whole lot.

So now Little Fish needs a brace, which will probably impact her ability to self propel. Not that this matters much at home at the moment, since her wheelchair is still out of action. Otto Bock Minny tyres are £149 each. The chap who is sourcing them is so outraged at this that he is doing his best to find off-brand replacements, but this means I need to send him the wheels from her chair. And Otto Bock Minny wheels are not quick release. Anyone got a spanner?

And Mog, well, apparently Mog just needs to go into cold storage until June, and then back into storage until however long after June it'll take for one doctor to refer to another doctor. And then she also needs to stop costing the NHS money.

So how much do you think you are worth
Will anyone stand up and say?
Would you say that your life was worth nothing
Until Someone was willing to pay? *
Tia

PS - and although I reconnected Mog, I failed to switch her feed back on. A fact which I only discovered at 8PM. So it won't finish until gone midnight. Oh - and did I mention the fact she isn't tolerating it very well any more? Finally spoke to the dietician this morning, and she says there's nothing else left to try.

And as I write this, my upstairs neighbours have begun an evening of DIY - hammering and clattering about. I realise that as Mog's feed's still running I'm not actually in bed (it's after 10 at night), but they don't know that...
*thank you, G K

Tuesday, 2 February 2010

Who needs British Gas?

Gotcha has appointed himself our official boiler inspector. He is confirming British Gas' opinion that it needs to be changed immediately. I'm not convinced that his plans for an open fire to replace it are quite what's required though.

Grolly meanwhile is taking life a little more easily.
I'm not worried. Not until she works out how to switch it on, anyway.

Tia

Monday, 1 February 2010

When Monty Came to Stay

Little Fish's class have a mascot; Monty the Monkey. Monty gets lonely at school when all the children are gone, so he takes it in turns to come home with different classmates. Last term he visited all the children in order; Little Fish was the very first to take him home. This term he is visiting children who have done extra-specially good work. And today he came home with Little Fish again. Monty has a diary where he records all his adventures, and by all accounts he's been having a pretty exciting time of it; building snowmen, going to the theatre, playing on computers, going out for pizza, staying with grandparents, getting stranded on snow days.

Tonight he's done none of that. Little Fish carried him home carefully, waving him at all her classmates and saying "Now, children, no one can take Monty acos he is coming home with me." And then proceeded to toss her doll out of her pram, tuck Monty in, and tell him he was a tired monkey and needed his rest.

And that was that. Monty has been lying in the pram; he's had a ham sandwich waved at him, and been outside for two minutes, but apart from that, it has been his job to sleep and our job to keep quiet, but not too quiet, to let him get his rest.

I hope that was what you needed, Monty!
Tia

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