Broneirion 2008

It's been a busy week. Here too - have there really been 3,000 of you visiting me in my absence? I must go away more often!

The problem with Wales is it's a long long way from there to here. Obviously not as far as it would be for many of you, but in our small island, it still feels like a long drive.

Bus loaded, friend and fellow quartermaster inserted along with assorted luggage, we chugged our overloaded way through villages and towns and over county borders until after 5 long hours we were greeted by the sight of this
Broneirion Lodge. Up past the lodge and round to the housewhere we paused to enjoy this view before finding our campsite.
Having stopped for a lengthy lunch driving break, we assumed the girls might have beaten us to the campsite, especially since they were taking the motorway whilst we had gone the scenic route. However, we were greeted by the site of an empty field, and news that the Guides were just passing Birmingham. Since we can usually hit Birmingham in a little over an hour, the news that they were still there over 5 hours later wasn't the best we'd ever heard.

We made coffee.

One lone Guide came to join us in our splendid isolation; her family had been holidaying in Wales so they dropped her off with us, handily staying long enough to refuse coffee but help pitch a tent against the threatened rain. Several hours later, a coachload of hot, tired, but still smiling Guides arrived and set to work turning an empty field into something dotted with loads of these:

As Mog's doctor had vetoed camping this week, we got to spend the nights in comfort. We stayed at Trewythen Farm, where the friendly Mrs Davies not only provided comfortable beds, but cooked up a stupendous breakfast each morning to insulate us against the rigours of the day!
Excuse the mess; it's ours not hers. Little Fish was rather taken with her brass bedstead. And we made the handy discovery that if Little Fish sits on the floor of an ordinary shower cubicle, she can hold Mog's head for me as I shower them both. I suspect this is a technique which will only work for this year though - tis a bit cramped inside the cubicle with all three of us. The advantage of staying on a B and B at Guide Camp is that you can shower every night. The disadvantage is that you become fully aware of how badly you stink, having spent the day cooking over wood fires. Still, Mrs Davies was very kind and didn't point it out.

Little Fish was quite taken with the bedwarmers. I was less taken with the stairs, considering that I had to carry both girls up and down them each day. But how thankful I am that we live in a flat. I have friends who until very recently were still carrying their disabled 14 year old up and down stairs regularly; I have not been sufficiently sympathetic towards them up until now. So, down the stairs and into the dining roomLittle Fish was an absolute star, sitting nicely at the table, using a knife and fork, asking for more toast which she actually ate rather than crumbling onto the floor, and making friends with the granddaughter of the house, who was the same age. And I got to enjoy fresh coffeewhilst also enjoying the view across the hills. Mog got to enjoy a comfortable post-medication doze each morning before being hassled by the hounds of death* on our way out of the farm.

Once safely into the bus and on the road (no photos of the yard due to said death hounds) we got to meander up into the hillsand down again
on single track roads past a 1692 cottageand over little rivers and streamsbefore arriving at the campsite usually just as the girls were finishing their breakfast. An excellent time to arrive - none of the morning nagging to be done, just flagbreak and activities. And coffee.

And what activities! We spent one morning sending the girls on a wild goose chase circular incident hike Indiana Jones style. So whilst the girls and I got to sit and enjoy views like this,
the Guides came ambling through in patrols, having been abducted and made to create new clothing from plastic bags, tested on first aid for snakebite, moved stepping stones to cross a river, picked their way across a bog blindfolded and finally recovered treasure without setting off an invisible forcefield. Our job? To point them in the direction of the next evil dictator Guider.

Another day, we went into Llandinam, the local village. There was a show in the village hall which we visited briefly before exploring the village itself, walking past pretty little cottages
before ending up at what may just possibly be the playground with the finest view in the country
Mog thought so, anyway.
Another day we took a trip to Aberystwyth Where we enjoyed the views from the top of the 1277 castle
and then enjoying the view over Aberystwyth from Constitution Hill, via a ride on the funicularThe Guides enjoyed time on the beach, but salt water and sparkly new wheelchairs don't mix terribly well, so we gave that a miss.

On our last full day in camp we spent the afternoon doing some backwoodsy style cooking. Cakes baked in oranges were a hit with nearly everyoneand sausages and fish baked in newspaper seemed to go down ok too. We'd not tried these before - the sausage recipe came from our South African Guide, and the fish technique from Foxlease.

To cook fish in newspaper, take one fillet of fish. Wrap it in newspaper, tie it with string, and soak it in a bucket of water. Squeeze all the air out and throw it onto the fire (nb - embers work best!). When the newspaper blackens, the fish is cooked.

To cook sausages in newspaper, take a sausage and wrap it in a large sheet of newspaper. Throw it into the fire. When it looks like thisit's done! The fish and sausages didn't hang around long enough to be photographed, sorry.

If it looks wet in these photos, that's because it was.

Baked apples were a hit when spread on the Welsh cakes and scones baked in a foil wrapped box over a barbecue were quite successful too.
We were honoured to have the Chief Commissioner for Wales join us in our cookout; her office is in the lodge we passed on our way into the campsite.I hope she enjoyed herself! The girls were pleased to have someone else to cook for, anyway.

Then sadly it was time for the girls and I to disappear back to our farm house for the night, to swap the great outdoors for showers and bed. Meanwhile the Guides sent songs echoing across the mountains as they had their final campfire.

And in the morning, we watched as the field emptiedbefore loading up our own bus and trundling back over the mountains and home again. Back to the local Guide Hut, to apologise to waiting parents and explain that the coach driver had gotten lost, and the girls would be at least 3 hours late home. Then back home properly, to the always pleasant discovery of a fridge door left open all week. But let's not be too real shall we? The girls (mine and the Guides) had a lovely week together, and the leaders can't have had too bad a time, as we are already planning our winter weekend away.

A mammoth catch up. Hope you are all enjoying the many giveaways going on this week, not just my own - do go and take a look at some of the other things on offer.
Have a good evening,
Tia


* A working farm has working dogs. It is somewhat disconcerting however to be greeted by five sheepdogs intent on herding the bus into the correct corner of the yard. It is even more disconcerting to have said dogs leaping under the bus to bring it to a standstill. Little Fish does not like dogs and shrank into her chair a bit more each time we encountered them. Mog found this immensely entertaining. I counted limbs each time we made it safely through the pack and realised by the end of the week that just possibly, seriously violent dogs would not be a sound business proposition for a farm house taking paying guests, and that therefore the bark was more likely to be bluster than threat. We lived, anyway.

Bloggy giveaways are here again

EDIT This is now closed - I will pick a winner shortly. Tia


It's that time of year again. We had the boys' dungarees last time, here's your chance for the girls' version. One pair of pink and white striped Osh Kosh B'Gosh dungarees, size 4T. These are brand new, with tags, never worn, and very scrumptious.
You do not need to be a blogger to enter, just leave a comment - but I do need to be able to contact you if you win, so if you don't have an account then please leave an email address somehow. I live in England, I will post these anywhere, but if you live elsewhere then they may take a while to reach you.

Please only enter once - comments are moderated and as I am away until Wednesday it may take a while for your comment to get through - they will be counted and added though! I will choose a winner at random at the end of the week.

Don't forget to visit the main page here to find hundreds of more giveaways.

Have fun!

Tia

We're all going on a summer holiday

We're all going on a summer holiday
No more broadband for a week or two
Mud and mayhem on a GirlGuide holiday
No home comforts for me or you
For a week or two.

Went shopping today for just two days out of the five we're awayIt's a good job we're not taking the tent any more - not entirely certain where we'd put it! Little Fish will have to make do with just one wheelchair too.

In other news, Goldie's teacher brought these to our house last nightin memory of Goldie.

I don't think we'll have internet access over the next few days. If I can sort out how to join in from a long distance we may just be taking part in the summer bloggy giveaway carnival. But doing so will depend how organised I am before we leave tomorrow morning! It starts on Monday, so if I'm not here, do go and have a look anyway - lots of other people wanting to give things away.

Have a good week, and I'll be back on Wednesday if not before.
Tia

Then again, maybe we won't.

So, Friday morning bright and early we are booked to drive to Wales for Guide Camp.
Naturally, this means that the midnight madness from Mog has turned out to be a chest infection. Not only that, but the GP has vetoed camping with her this week.

So are we staying home? Nope, have spoken to the campsite owners and they have booked us into a bed and breakfast for the week; could not have been more helpful. We'll join the Guides during the day and then retreat to comfort at night and have somewhere warm and dry to retreat to if it rains. Sounds pretty perfect actually!

I hope she's over it by next week; it won't be quite so easy to sort out alternative accommodation at New Wine or Special Kids camps. And we are definitely NOT missing out on Italy!

Tia

2.51 AM

The good:
A night out - good food, good friends, good company, good fun.

The bad:
Being woken two hours after falling into bed by one small child drowning in her bed.

The ugly:
Attempts to get my brain functioning correctly to sort out the priorities - treat the fever? treat the breathing? treat the seizure?

We have emergency medication for the seizures - this is helpful. However, the emergency seizure medication represses respiratory function - this is less helpful. Choking and drowning and running a temperature can mean chest infection, so making it even harder for her to breathe isn't a great idea. On the other hand sitting seizing for hours on end isn't particularly brilliant either. Is she fitting because she isn't getting enough oxygen due to the breathing troubles, or is she not breathing properly because she is fitting? Or are the two completely unrelated and just poor timing? Masses of air in her stomach which can in itself cause her to hypersalivate, choke and drown - has that caused the problem or is that a byproduct?

Suctioned, nebulised, paracetamol and ibuprofened, she is now sitting next to me awake, fed up, and busy chewing the cud.

Oh. 2.30AM in the middle of this is not the best time to discover that your SP02 monitor isn't where you thought it was either. Nor that the large pile of suction catheters sitting in the bag with the pump are in fact just wrappers. I live alone; it is therefore most likely to be my fault. But the last people to use them were at the hospice. Hmmmm...

Norah Jones appears to be working her midnight magic and Mog is drifting off again; fairly gaspy and Sats a little low (yes, I found it, bottom of the suitcase - should unpack really before we go away again!), but much happier and no more seizures.

So as she hopefully drifts back off again, I'll ask you to spare a thought again for my GodDaughter Eve. Eve had surgery yesterday, has had her tonsils and adenoids removed as well as some exploratory surgery. She's now recovering in intensive care, and I know that Tina and David will value prayers over the next few days.

Goodnight or good morning, I'm not sure which it is - but I very much hope there's some more sleep in it for us both somewhen between now and breakfast.
Tia

Hot Wheels

Little Fish has her new wheels. No pictures of her facing forwards as she didn't sit still long enough to get any. Far too busy whizzing round in circles, doing wheelies, freewheeling from one end of the house to the other shouting "Brum Brum WHEEEEEEE!!!!!!!!". I think it's safe to say she likes it.
Extracting Little Fish from the chair for a few minutes, I got some comparison photos.
On the left, the chair which she has had for the past 15 months, supplied by our local wheelchair services. That isn't just a trick of perspective, the wheels on her NHS chair are indeed bigger than the whole of this new little Otto Bock Minny.
Not the lateral supports (admittedly not hugely supportive) which apparently "you can't fit to an active user chair or they will restrict movement".

So where was Little Fish when I was taking these photos?
Busy multitasking in the bathroom. It's good to see her earning her keep.

Sadly, just minutes after I had taken this photo she stopped mopping the floor and started drinking the water from the mop bucket.

Oh, and in other news, remember that blister?


After having several people look at it and go "hmmm" we think we have an explanation. It is a burn. This makes me feel physically sick. Somehow, Little Fish has burnt her foot. Due to the position of the blister, the most likely explanation is that her footplate got overhot in the sun, her heel came into contact with it, and fried. She has no feeling in her feet, nothing that would have alerted her or any of us to the fact until it was too late. I know she has no feeling in her legs; I'm doubly careful to check water temperatures, slather her with suncream, keep her away from the cooker and hot food. I never thought to check the temperature of her hotplates footplates when they're sitting in the sun though.

Becca - we're definitely in the pop brigade, in fact there was a competition to see who got to do it. Our community nurse won in the end but only because she had the proper sterile kit plus a swab to check for nasties.

Tia

Hide and Seek

Hide and Seek Little Fish style.
I can't see you, so you can't possibly see me!
Did you miss me?
Gis a kiss then!
And please don't be cross about my drink.

Ok then . But only because you're cute!
Tia

Picture Post.

Take one great grandmother, two grandmothers, three mothers, five daughters, five sisters, one brother, one father and one grandfather, and what do you have?
A boatload! - Oh - that works out as six of us by the way before you try to find spare excess relatives.
Today we celebrated Great-Grannie's birthday by taking a boat up the river.
Something my mother has wanted to do ever since she moved here 37 years ago.
It's pretty, the Thames.
Lots of rather nice houses.
And lots of other things to stare at watch
Peaceful countryside.
And rather jolly nice boat houses. Stuff the boats, I'll live here!
Little Fish was not convinced about the locks
Going into a dead end seemed like a bit of a waste of time to her.
And then the end sprung a leak - Help!
Apparently she wasn't the only one to worry - I want to know who put this dog into a life jacket and more importantly, how and why? Don't dogs swim?Finally much to Little Fish's relief, the gates opened and we were off again.
Not photographed here is the lock keeper in his electric wheelchair; Little Fish was impressed with him. Grannie thinks this may be a better option than dustbin man; LF is not convinced. We'll give it time.
Pretty Lock Keeper's Cottages though - she could keep me in one of them quite happily.
This boat was called the Watertight Alibi. We wondered whether this one's Alibi was less watertight.

Poor joke you say?
Mog thought it was funny!

Past more pretty houses
And lots of boat houses, the university boat houses, people walking, dogs swimming, swans congregating and Canada geese honking. Round a corner

And suddenly we were in Oxford.Time to get off the boat.

Mum had phoned the company who assured us the boats were wheelchair accessible. Not bad for a boat built in 1912; nice level access onto the deck although we'd have had fun trying to get to the saloon if it had been raining. Only two steps down into the boat at the home end too.

It was a slightly different picture at the Oxford end! These two boatmen decided not to moor up next to the ramp as "they're only children, and we'll help you carry them up the steps".
I have a feeling they may have regretted that decision once they realised how much Mog's wheelchair weighed.

Across Oxford to find a nice cafe for lunch, and I came across a worrying baby changing bench.
Intended for use by children under 12 months old. Maximum weight, 24Kilos. That's 55lbs! I know children are getting bigger, but a 55lb baby? I went by weight not age and both girls were thankful.

Home via the big red bus, and back to normality with evening stuff. I'd be grateful if someone could explain this to me though. Remember that pic of Little Fish's foot yesterday? Here's an update.
She has touched nothing, worn nothing but soft fleece slippers (no socks even, as they caused marks around her shins), she has not been hiking or kicking or moving her legs (she can't), they haven't been resting on anything. And tonight this.

I know she likes to keep my life interesting but this is getting ridiculous!
Tia

Of flowers and fusses

More loose plans today. We did not get into town, we did not get a new front door key cut, we did not get to take some stunningly beautiful photographs of our town centre to stun you all with my awesome camera skills stroll around the older parts of town enjoying the pretty things.

Instead, we walked to the post office, posted a couple of letters, and picked up a new driving licence application to replace the one Little Fish shredded (nb to the commentator; we do have a credit sized licence, we also have a paper bit which has a list of all your speeding fines further information; it was that bit she managed to destroy, not the plastic bit!).
We had lunch at our local pub; lasagna for Little Fish and a rather nice though awfully named "rustic deli platter" for myself - big gooey blob of melted Camembert, a loaf of bread and a pot of chutney. Oh, and three olives. Three.

We came home and hit the garden. We mowed and strimmed. I say we; I mowed and strimmed, Mog laughed, Little Fish mainly got in the way, but occasionally disappeared inside which was only marginally less helpful than parking her chair immediately in front of the mower as it meant I had to keep stopping to check what she was doing. Mog really needs to develop her supervision skills.

We weeded - I picked the weeds, Little Fish gathered them up and then dropped them round the corner and refused point blank to put them into the compost bin or move so that I could. We found the first jasmine flower
And, on the other side of the trellis, the first raspberries.Please note impeccably manicured lawn through the gaps. Someone ought to notice it!

We sat on green chairs under the apple tree and enjoyed smelling the jasmine and sweet peas. Little Fish got the hump because the apples aren't big enough to pick yet. Mog giggled because Little Fish was cross. She (Mog) does take the pressure off; it's hard to stay cross when there's a small child giggling (and she giggles well). It's strange; when Mog was a baby and she cried all the time (and I do mean ALL the time; the only time she stopped was when she was asleep, the only time she slept was when we drugged her), Goldie found Mog's cry hysterically funny. And Goldie's giggles helped me to cope with the reality of living with such a desperately unhappy little baby. Now Goldie's gone, but Mog's giggles help me to live with Little Fish's moods and frustrations. Big siblings are helpful creations!

Back to our weeding, and I want to know what the left lupin had that the right one did not haveWhy have the slugs and snails stripped the left one and totally ignored the one on the right?

Back inside now, and Little Fish "helped" me with the laundry by carefully distributing each beautifully folded pile in smaller piles over every inch of the house. She also demonstrated her talent for separating pairs of socks, and for hanging every single piece of wet washing on just one tiny part of the clothes horse, then screaming when I redistributed it. Fun times...

In sorting the laundry, we found this stack of bibs belonging to nurserywhich, when added to the red one currently in the machine, makes it about a fortnight's worth. Oops. Sorry guys; you'll have them back by the end of term.

A short pause to admire the flowers we bought last weekHow is it that the flowers I buy last a fortnight or more, whereas the flowers I pick wilt with the setting of the sun?

More tidying, and this discovery
Little Fish appears to have turfed the Rackety's doll out of her wheelchair, and decided that Little Jenny Wren's creation stands in greater need.

A shared shower, and two girls posted into pyjamas and ready for snuggles bed. And a less pleasant image to finish with - Little Fish's foot
The original pressure sore is healing nicely. So how is it that tonight she suddenly seems to be developing another one underneath? She has not worn her splints nor slept in her sleep system nor worn shoes for weeks, she doesn't even wear socks since they seemed to cause problems with her shin. She is wearing soft fleece slippers and that's all. I'll spare you the shots of her stoma, which is now bleeding freely and bubbling with orange gunge.

And now Little Fish is sleeping peacefully, Mog is not, has been in bed for a while and is heading for a dose of sedative any minute now. After which, I need a bath; my legs do not enjoy strimming!
Tia

Plans aplenty

A nice day according to the diary:

Mog's end of term show,
Little Fish's end of term picnic,
dentist.

Mog kindly wakes me at 3AM to make sure she was up in plenty of time for her star role - the mouse bride from "A Mouse Lived in a Windmill in Old Amsterdam". I've had a peep at her costume (well shielded by her teacher so as not to spoil the surprise) and she makes a very cute mouse. This does not excuse the early start.*

So an early start, and yet despite this still not remotely awake by the time our carer arrives. A different carer to the woman we were expecting, and late. Nevermind; she's here now, Mog's awake, there are clean clothes in a pile waiting to be put away, so Mog is up and dressed.

Little Fish stays asleep. She's had a busy week, and I am enjoying the peace, so I leave her. Carer leaves, LF sleeps peacefully. Mog's bus comes, I throw her onto it, only mildly annoyed by the fact that instead of knocking on the door the escort chose to stand and wait quietly until I noticed the bus' presence - for some reason no reversing beeps today. LF sleeps.

More coffee, a clean set of clothes selected for LF, a quiet sit and some blog-chasing, and still the child slumbers on. Mog's show is at 10. At 9.40 I enter LF's room and she is still sleeping far too soundly to be woken up. Emails, admin, phone calls, more coffee and a chocolate brownie, and finally at 10.15, a small voice calling for Mummy.

With such a late start, she doesn't finish breakfast until past 11, and is definitely not going to be ready for a picnic lunch at 11.45. I consider going to the picnic anyway, but LF makes it very clear she just wants to curl up and cuddle and in her words "stay 'ere Mummy, be Mummy baybee now". Who am I to argue with that? So we have a nice long cosy cuddle and a snuggle and a munchy nibbly late lunch which turns into an early tea - if you can combine breafast and lunch with brunch then is a combined later meal lupper? dea? It was nice, and peacefully relaxing, anyway.

We are still nibbling and cuddling and singing silly songs when the phone rings at 3.15. "Hello, I'm calling from the dentist". Oops. Many apologies, and a new appointment made for the one day we are home between Special Kids summer camp and our family holiday in Italy; that'll be fun. And now a minor panic, I realise that I had told school I would be collecting Mog to take her to the dentist, school finished 15 minutes ago, have they put her on the bus or is she sitting in the classroom waiting?

Thankfully they have put her on the bus, and she turns up very pleased with herself. She and Little Fish celebrate their reunion in their own special ways - LF undoes Mog's chest straps, Mog dribbles on LF's head, they both giggle. LF lines herself up in front of Mog, Mog kicks out, LF "tells", I mock shout and they both giggle again.

I read Mog's home/school book and realise that I forgot to pack her any lunch. Oops. She's also wrapped in a blanket as she had no spare top. A wonderful blanket, totally coordinated with her spare clothes, pink and purple and very soft and lovely, but oops again.

So, no show (although nursery did send home Mog's mouse ears and veil - very very cute!), no lunch, no dentist, and I realise at 5PM I had other things planned to do in town once we had been to the dentist - no fixing of LF's glasses, no posting of documents, no collection of incontinence supplies or ordering of drugs.

Just lots of cuddles, giggles, and love. I'm not convinced that's a bad exchange. Although having just discovered that Little Fish has shredded my driving license as well as posting bits of pizza under the computer table and using her thickened drink to glue Mog's waterproof cape to the floor, I am rethinking the wisdom of having had a full day inside!

Now Little Fish is fast asleep having asked for bed at 6.30. Mog is still up and grinning at me, getting increasingly banana shaped so I will be dosing her up shortly and tossing her into bed. She says she'll sleep longer in return for staying up later but I'm not convinced she'll keep her side of the bargain. We'll see.
Tia



*the sodden, stinking, bed might though.

Word Pictures

No camera today (forgot to charge the battery and left the spare in Florida with most of the memory cards) so you'll have to use your imagination. They say a picture tells a thousand words, can I draw a hundred pictures with a handful of sentences?

We passed a pet wolf today. Husky possibly? Grey and white, fluffy, huge.

Lunch with friends - nice food, good company, and two small girls playing nicely together.
Here insert an imaginary photograph - is it a plate of potato and hoummus, two toddler heads bent over a jigsaw puzzle, two peaceful cups of coffee? A sticky trail of melted ice cream, a screaming toddler not wanting to leave the house, an overly soggy nappy? Let's not be too honest, shall we?

Home, and a prettier picture for your contemplation. A silver plate, a butterfly napkin, and a stack of shortbread, brownies and Bakewell tarts. Not homemade - honesty will out - but yummy nonetheless. And, thanks to lunch with above friends, a tidy house ready for our next sets of visitors. I don't know where the dish came from; I opened my cupboard and it was there. I must get myself some silver polish and brave investigate the farther reaches of our crockery cupboard, see what else has been lying there, forgotten.

Lots of girls playing more or less together in the garden. A creaking roundabout (a better video than photograph perhaps?), a squeaky swing (ditto), a pitter pattery fountain with some clinky clanky pebbles busily being washed by several smallish girls, and just the smallest hint of rain. The scent of sweet peas and jasmine, and the stickiness of above mentioned smallish girls bindweed winding its way around the honeysuckle.

"Bread Cheese Mummy PLEASE" and some early evening mindless television with three tired people.

Two carers, two little girls, one shower, two separate beds.

And now perhaps a little imaginary soundtrack for you
A feed pump whispering its way through the last of Mog's milk. Mog snoring gently, short pauses and satisfied sighs. Little Fish's Nippy wheezing in and out. The faintest hint of an aeroplane in the sky above, and a small breeze blowing down through the chimney. The click clack of fingers hitting keys, and tiptoe footsteps creeping around upstairs.
A peaceful evening after a pleasing day
Goodnight
Tia

Kedgeree and memories

*This is a tale of two blog posts.

The first is a brutally honest, self indulgent, pondering the mysteries of the universe and thinking back to this date one year ago. But I've just done that one "live" at housegroup and I don't want to go there again. Pray for me if you will; I am sad tonight.

The second has more to do with a delightful little girl you know as Little Fish and her ability to reinforce the fact that life goes on.We cooked kedgeree for tea tonight. And Little Fish demonstrated both her ability to make masses of mess, and her ability to eat smoked haddock and hardboiled eggs whilst totally ignoring the rice and peas. Apparently the peas did taste ok once mashed with banana. Ours not to reason why.

After that (and an incident with a black felt tip pen, her face and my feet), we decided to cook a Little Fish of our own before bed
It was necessary to stir the water quite hard, to stop our Fish from sticking to the pan. Apparently bubbles and water just don't work as well as oil and Teflon.

She does have a habit of making sure we get the important things done. The important things being smiles, cuddles, new and varied ways of creating havoc.
Tia

*gratuitous second posting of this photograph (first is lower down in the text, who says I have to be linear?) as it's gorgeous and makes me smile.

Can someone explain this to me?

Little Fish is obsessed with the computer. If I'm sitting at it, she's sitting at it, little fingers just gently tapping at the fringes of the keys or trying to drive holes through the screen. If I'm not sitting at it, she makes a beeline for it, hitting the keys, deleting paragraphs, setting MSN to ignore friends, and generally causing mayhem.

Every time she tries this I tell her not to touch the buttons. Every time I leave the computer I tell her not to touch. Every time I come back into the room to find her deleting my programmes, I shout or stomp or remove her from the room or move the computer away and ignore here (not all at once obviously; have tried dozens of different ways of getting her to leave the thing alone). Each time, she looks at me being cross and laughs or shrugs or pootles off to wherever I have put the computer and starts again. Every single time, no matter what I do, she is completely unbothered by the fact that I am cross with her.

So, just now, I once again put the computer down and left the room. When I came back, she hadn't moved, the computer was untouched. So I told her she was a very good girl, I was very pleased with her, well done, fantastic, and all the rest of it. And she burst into tears as if I had given her the worst telling off ever.

So what's that all about then?

She does "get" when I'm cross about other things - she's very good at "orry Mummy" when she's emptied the pantry or scribbled on the floor or raided the breadbin; it's only the computer she does this with.

Tia

A Day in My Life - July

Thanks to Little Jenny Wren for organising this again.

A peaceful start to the day, and our usual morning carer back at work again. Mog woke up just minutes before the carer arrived, so had no time for watching television. This put a less good start on her day, but since it gave me more time in bed, I wasn't too sympathetic with her!

Little Fish slept on. And on. Until I glanced at the clock and realised the school bus was due in ten minutes. There are advantages to the bus being late every single morning - I did in fact just about have time to throw her into some clothes and a hairband or two, insert breakfast into her mouth and water into her tube, clean some crusty bits and plonk her in her wheelchair before it actually beeped its way to the bottom of our road.

Two girls, two bags, one set of swimming things all safely on the bus, I put our recycling bin out came back inside and started to tackle this:and straightening out bits like this:my latest from the "don't ask" shop*. Beautiful, but going to be a pig to iron.

With stunning timing (school holidays beginning next week), our cleaner has resigned. So next step was to turn this sort of thinginto something more closely resembling this:and to turn nice sparkly clean and sudsy water into this:before enjoying a decent cup of coffeewhilst having a meeting with a researcher wanting to know my opinions on posturally supportive wheelchair seating and its impact on daily life. An interesting chat.

Little Fish came home just as we were finishing up, so gave a nice demonstration of how she can move about well in her posturally unsupportive wheelchair, and how postural support would reduce her ability to move about well.

Lunch next. I am confused why Little Fish decided to leave thesebits of crust on the settee, but felt it necessary to raid the bread bin and take only the centre of this sliceThe ways of this child are passing strange.

As I was clearing up, Little Fish decided to decorate my diary for next week.Since she managed to combine this with shredding several receipts, attempting to deface my passport and birth certificate, peeling dust jackets off books and keys off the computer, I decided possibly we ought to go out.

So we went to the post office and posted my grandmother's birthday card.We also stocked up on a few essentials; two for me and two for Little Fish - I hope you can tell the difference!
Time for our next meeting; this one was with our occupational therapist. Little Fish has outgrown her throneand needs something equally supportive to replace it. She also needs something posturally correct to sit in for mealtimes. Posture has been big today. We also looked at Mog's bedand agreed that when she has outgrown it (she's nearly there now), we will need to have something built in to replace it, as it is the only way we will fit an adult sized bed into her bedroom. Does anyone know of a built-in bed maker who can incorporate a height adjustable, profiling mattress?

As our OT left, the post arrived. Still waiting for some parcels (whenever I have something shipped by sea I remember how big this planet is; air travel has shrunk my perception of the world), also waiting for some cheques. Instead I received this:Great. Still, as I picked it up from the hall floor I noticed this hanging from Mog's doorand realised that 12 months ago, Mog was busy being a bridesmaid at her parents' wedding. Happy anniversary J and J! The bouquet is beautiful for what it symbolises, but I think I prefer these oneswhich are sitting on our hall table for day to day prettiness. They definitely smell better, anyway.

Time then to get outside and climb under the swingseat to remove the bindweed from the deckingand then to struggle yet again with our sweet peas.It doesn't matter what I do to them, they will not grow up the wall, the canes, or any other kind of support, preferring to sit around glumly staring at the soil. I have the world's only depressed sweet peas. I wonder if planting St John's Wort around them would cheer them up?

Little Fish helped me to gather the fallen applesand then helped me again by distributing them generously around the kitchen.I'm now wondering what, if anything, to do with them. They are about the size of cherries, and I suspect not terribly edible. We shall see.

A beep beep beep alerted Little Fish to the prospect of interesting traffic coming our way, and she was hugely excited to see the school bus return with Mog on board.
Mog herself was pleased to be home, but less impressed with the news from school that uniform will be compulsory for her from September. She has always had a school uniform, but worn it on average once a term. But for the next ten years she will now spend each and every school day clad in royal blue with a pretty picture over her left breast. She is not going to be excited by this prospect - I wonder if the governors who made this decision have realised how much Mog enjoys showing off her latest outfits? I suspect though that they didn't do it to spite her - we'll just have to hope that shoes are not a part of the uniform, and that she will be satisfied by rotating her way through her fancier pairs instead.

Our third appointment of the day was with our Guiding District Commissioner, who called in to verify documents for my CRB form.

Tea time, wash time, bed time for Little Fish, pyjama time for Mog and then our sitter arrived. Leaving Mog and the sitter watching television, I headed off to Youlbury for an end of term campfire with the Guides.I do like living in the town where I grew up. I moved from being a Guide to being a Young Leader and then to an Assistant Guider, all in the same Company. Mum is the Guide Leader. Tonight, Dad was helping with the Camp Fire, as was the parent of one of the newer Guides. This parent was my own leader when I was a Venture Scout. And in turn, Dad was his Scout leader. Connections.

One very smeechy fire, lots of girls making twisters, one new parent recruited to helping with Brownies. Home to two sleeping girls. One set of pictures uploaded for this post, and I am now going to take some of thismix it with some nice warm water, and attempt to remove the smoke from my skin and hair. I do love that campfire smell, but less so on my sheets and in the morning.

Night, everyone
Tia

*Oxfam, Cancer Research, Helen and Douglas House, could be any of them. If it's going to bother you that a piece of clothing comes second hand then don't ask. Family stuff.

Popularity

We had a meeting this afternoon about New Wine next month. As we walked in, we were greeted with "now this is the woman we love!" Very nice - but why, exactly?

Because I am such an awesomely wonderful person to be having my girls? Refreshingly, no.

Because I am such an amazingly excellent person to be taking my girls camping? Nope, not that either.

Because, setting aside my girls altogether and viewing myself as distinct from them (not something I can manage very well; strip them away and who am I?), I myself am simply truly loveable? Nah, not even that.

So, why am I "the woman we love"? Because we need electrical hook up to power Little Fish's ventilator overnight. This means that firstly, our church has been given a camping slot which is conveniently central to everything which is going on rather than being placed on the outer edges (a shorter distance to run the cable), and secondly, that we will have an electrical socket in our tent. It is not beyond the realms of possibility that this will be used by fellow campers to charge phones and cameras*.

It's nice to be loved.
Tia

*My fees are modest. I am also considering hiring out Little Fish with her powerchair to carry bags of shopping between the carpark and the campsite. Her fees are less modest.

Interlude

Break out the Toblerone alpine horns, practice eating fondue yodelling, get yourself ready to take loads and loads of cable cars fit for mountain hikes, for we have booked our holiday and are going to Switzerland!

Friend visited overnight and we actually made our plans*. Sadly it looks as though we'll miss Heidi country, but Chalet School, Susan Interferes, and various other childhood books will all get a look in.

We're not going until April next year, but having simultaneously organised that and sorted out a week away over New Year, I am mildly startled** to realise that we are now fully booked for every single school holiday from next week til next summer!

Such a shame my girls will never go anywhere, never enjoy anything, prevent me from having any kind of a life [sarcasm mode: off].
Tia

*we've only been talking about it for about a year now.

**alright somewhat nauseatingly panicked at the speed of life

Mog sings opera

An early start this morning, lots of complaints and grumbles and general grouchiness until finally I got the message and hooked her up with Il Divo. What can I say? She's a fan!

Tia

Hotchpotch

I have my own computer again; here be photos from the last few days.

Getting ready to go to Helen House, this made me very happy:
A quick lunch before leaving the house, discovering this on the last bite of my sandwich made me distinctly unhappy:
Here, a reason why the parents' flats in Helen House are so relaxing:And here, another:Now you might think this site would be cause for complaint:but it kept my garden alive, and absolved me from any feeling that I really ought to saunter down Cowley Road into Oxford and DO SOMETHING with my time off. So it was welcome instead.

Lots of time cosied up with a good book, plenty of time cuddling with the girls, nice food, a choice of company or peaceful solitude. Very nice.

And we had been home about an hour when this sight met our eyes:
Bob with our new gate. Hurrah! A new edge to the platform which wasn't a ramp too. The whole not entirely finished but a distinct improvement and the promise of his return if it doesn't rain tomorrow.

A lazy afternoon with friends, a party at Rainbows for Mog, a Grannie to help put the girls to bed, and soon my very own wonderfully comfortable bed.
Tia

You might have a medically complex child (or two) if...

When you get to outpatients, the receptionist recognises you.

The nurse weighing your child is the same nurse who did pre-consultant checks in a different hospital, the day before; and who will be going on the same holiday as you later this summer!

As you wait for your appointment, you are greeted by one specialist nurse who takes the opportunity to have a quick chat instead of making a phone call.

As she leaves, another specialist nurse (different specialism) comes up to say hello.

This second nurse is followed by a paediatrican (not your child's).

You realise that you have been in hospital for seven of the past eight working days, without once being an inpatient.

When you get to see the consultant after a 45 minute wait, you are impressed with how short a wait that was compared to afternoon appointments.

A different specialist nurse, one who knows your inability to sign and return forms, is waiting in the consulting room with a form to be signed by you.

You are given open access to the specialist ward, and you consider this to be a good thing.
*****************************************************

Home tomorrow and back to reality. New plan of action for Mog's seizures; we are initially going to try to increase one of her seizure meds. The most likely side effect of this will be that she will not sleep. Wonderful.

But for tonight, Little Fish has settled after making hand and foot prints with someone from the BBC, Mog is having stories read to her and is alternately giggling and twitching, and I am going to swim traipse back to my flat for another quiet night.

Tia

Lazy Days

It is so nice to be able to do nothing. To sleep during the day, wake up, wander over to find a child for a hug*, then sit down with a new book and relax. To watch someone else wrestle with Mog's tangles, to not have to be the wicked woman who hurts Little Fish by cleaning her stoma, and to take time out from watching other people doing all this to come to a blissfully quiet games room and type this out on a computer which isn't missing any keys (yes, Little Fish has munched my laptop again).

I could get used to this. Although being denied access to xanga blogs as apparently they fall into the category of dating and relationships and are therefore banned by the service provider could get annoying!
Tia

*my own child, not some random stranger

Ceiling Track Hoist and Slings

This one's for Alesha (and anyone else who might be interested!)

Here's one of our overhead hoists:I much prefer it to any kind of mobile hoist. With the mobile hoist, you have to use your own strength to push the hoist from one place to the next. With the ceiling track, you simply press a button then pull gently. It takes up no floorspace at all which also helps!

We have four separate tracks - one in each girls' bedroom, one in the bathroom, and one in the playroom. That works alright for us, but I know other people who have a slightly more efficient layout whereby one long piece of ceiling track (sometimes curved) will go all the way through from bedroom to bathroom. This definitely makes it easier to move a child from bed to bath and back again, but it can also lead to very wet floors on the way back! The girls' hospice has H track hoists so the child can be lifted from anywhere in the room to anywhere in the room. With ours you can only go from the bed to the middle of the room and that's it.

Our bathroom not only has the ceiling track hoist but also a flip down shower stretcher:
This is phenomenally useful. It sits over the bath tub, and gets used as a changing bench and a shower bench. Then it folds up against the wall so we can use the bath too. Mog either has a shower on the bench, or is stripped off on the bench then hoisted up into the air. The bench is then folded away and she can be dunked into the bathtub. A nice bath, then she is hoisted back out, the bench is folded down again and we can dry her off. No drips in the bedroom, no needing to cover the bed up with waterproof towels, and with the bathroom door closed, no chance of her getting too cold either.

We have two slings - one which is a normal every day sling (actually we have two of those so that one may be washed), and one which is a "wet" sling. The dry sling is made of parachute silk, and is designed so that she can sit on it in her wheelchair all day long without getting sore. It's very lightweight. We simply roll her over in the morning to slide it underneath her, then hoist her into her chair with it. The disadvantage of this design is that the child does have to sit on the sling all day long; there's no way of taking it out from under the child unless you lift the child up (which sort of defeats the object of using the sling). Goldie had some divided leg slings which could be slid underneath her in her chair, but I prefer this design myself.

The wet one is the same design but made of a heavier fabric which lets the water through. After the bath we leave it to drip and it's dry by morning. Both slings go in the washing machine when necessary and come out nearly dry.

I hope that's helpful.
Tia

Helen House

How I love thee, Helen House!

Three nights of sleep coming up, three nights when the girls will be taken care of by other people, people paid to stay up all night and take care of them. Three days of rest and relaxation, three days when the girls will be surrounded by staff ready and willing to make them happy and comfortable, and to keep them busy. Three days when I won't have to do anything at all, if I don't want to. No mixing medicines, no changing nappies, no heaving lifting, no washing or cooking or cleaning. But all the cuddles I like (unless the girls are too busy), all the fun bits of being the girls' parent without any of the harder work.

That's the theory anyway. Sadly Mog's got hospital appointments on Tuesday and Wednesday, not ones I can rearrange, so we won't be quite as free and easy as we might have been. But just being able to walk downstairs after a peacefully uninterrupted night, collect Mog who will have been washed and dressed and made ready, and get to her appointments without having to worry about Little Fish, will be relaxation enough. I hope.

Three days with limited internet access - that's less pleasant, whatever will I do without it? I'll be testing blogger's new "scheduled post" option anyway, so don't go away... And if you see me sitting in a McDonald's with a laptop you'll know I needed my burger internet fix!

Tia

Blessed be your name

We sang this at church this morning
(disclaimer: this video is not our congregation singing it!);
I thought it worth repeating.



This week last year my beloved Goldie moved from my house to her new care home.
Less than two months later, she was dead.

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name
Matt Redman.



I don't know why.
I don't need to know why.
It is a difficult song to sing, but I mean every word.
Tia

It sounded so simple

Day five of Little Fish's assessment and the final review meeting. 2.15, child's presence not required. I have a footnote from the nursery nurse there, saying that she will be available to babysit if necessary. No problem; I have had enough notice of this meeting, so I am able to book a sitter who will stay with Little Fish and greet Mog from school. Except of course Mog is now off school - not an issue, the sitter will have both girls for me.

Rewind time a few weeks, and I have a conversation with Hazel, who will be in the area and would like to meet up for lunch if possible. That's great; it will have to be an earlyish lunch and I'll have to kick her out when the sitter comes, but still lovely to see her again*.

On Thursday I get a message from Mog's other family, can they call in on Friday morning to see her. So that's meeting at 2.15, leave here at 1.30, Hazel and Joni here before that, Mog's Mum and little sister here before that. Busy but doable.

Until, early on Friday morning it becomes apparent that I cannot get Mog's temperature down properly, and that, since she has had a temperature and discomfort for about ten days now, she probably ought to get to a doctor of some kind before the weekend. If we hadn't been at hospital all week, I'd have taken her earlier (how ridiculous does that sound? I can't get my child to see her doctor because we're in hospital?), but Friday she wakes early spluttering and struggling to breathe as well; definitely time to sort things out for her.

I phone the surgery and have an appointment for 10.40. Sort things out with Mog's other family who will now come to see her before we leave, and run around like a headless chicken trying to sort everything out for the day before they get here get myself organised.

Mog's Mum and sister arrive just as Little Fish wakes up (a week of assessments and she sleeps in until 9.30, wonderful!). Rather sweetly, little sister has brought a doctor's kit to help Mog get better. It turns out that Mog's reflexes are working just fine, especially if you hit her knees repeatedly with a hammer. Little Fish rouses herself enough to grab the toy phone, and the three girls have a nice time all doing their own thing but nearly playing together.

Out of the door and into town to get to the doctor. Very nice doctor, not one we've met before, who listened to my concerns, checked that I was happy with his actions, offered to have us admitted to hospital but was equally happy for us to wait it out at home, had a good look and a listen to Mog, and then found a lovely right sided lower lobe chest infection. Her old friend aspiration pneumonia strikes again. All the way through the examination he talked to both girls and to myself, did not once try to dismiss our concerns or overreact, was very clear about the things he didn't know and really made me feel skilled in my role as a parent. I wonder if he's read my letter?

Anyway, we left the surgery and headed for the chemist to pick up Mog's latest dose of antibiotics. It's been a few months since she last had any so that's quite good for her. I am sure that having a a suction machine has helped with this; being able to hoover up any grot she coughs before she reinhales it must be a good thing.

Home and unloaded with minutes to spare before Hazel and Joni arrive. Lovely to see big bouncy baby; Little Fish fascinated with "BOY!" who is equally fascinated with the wheels on her chair. Fair exchange I think - and they share a mutual fascination for grated cheese and bread crusts. One day I'm sure she'll get the hang of playing with other children rather than simply alongside them, but for now they were both happy and that's plenty good enough.

I change both girls after lunch and load them up with liquids and meds as appropriate. Hazel gathers Joni and baby bits, I try to collect my wits (and sadly fail), and leap into our bus ready to go. As I turn the ignition, I catch a familiar waft of poo, glance down and realise my thumb is less than perfectly clean. Running late now, I wipe it on a secondhand serviette from our last drive through a tissue and back the bus down the driveway. Thankfully, at this point, I glance down. Which is where I notice that my top and trousers both appear to be coated in chocolate fudge cake. Not the smartest idea for a meeting, but very late now, so I am sure an apology will be acceptable. Tick, tick, tick (the inner workings of my mind) - hang on we didn't eat chocolate cake. Tick, tick tick - your thumb was covered in poo. Tick, tick, tick, and I am out of the bus, into the house, flinging cupboards and drawers and small children out of the way as I search frantically for anything vaguely clean and uncrumpled, throw myself into a skirt and blouse in front of a very confused sitter, and head back out of the house once more.

Meeting is at 2.15, amazingly I find a parking space at the hospital before The Archers finishes, so am officially not late. Hurrah. Oddly though, by the time I have run upstairs and into the community paeds office, everyone else is assembled and waiting for me. Ah well.

The meeting runs its course; Little Fish is officially deemed to have a working age of somewhere under 2 and a half - she is at the moment 3 years 3 months. Her IQ has been assessed at 71, which puts her right at the very bottom end of "normal". Various referrals are made on her behalf, reports are read, and we discuss her eating. Her paed is very worried about her eating skills and is not convinced that her new improved chewing abilities are safe or sensible. He would like her to have a repeat videofluoroscopy, and I get the distinct impression would prefer her not to eat at all. This is not going to happen - not unless we can keep Little Fish away from other children for the rest of her life. For now we will carry on as we are, going slowly and at her pace, offering her purees when she'll let us and letting her graze on soft chewy things when she won't, with named feeders in school settings. But no more drinking until after the next vfs. And we will argue over sort out the rest once the results are in.

Home again, to an upset Little Fish - no, she hasn't read my mind and discovered that drinking has to stop again, she has managed to trip up on our ramp, tipping her wheelchair over on top of herself and cutting her face with her glasses. We've been waiting for her to do that for a long time - I do wish Bob would come back and finish his other ramp so that she would have a safe exit to the back garden.

Tia

*and as a handy benefit, she happens to be living at the moment fairly close to the ebay seller of a fibre optic curtain, and will collect it for me, hurrah!

Another hard day's work

Eyes today, and Little Fish impressed the tester and myself by being able to identify the pictures on the very smallest greyscale thingy wotsit (are you impressed with my technical vocabulary?).
Tissue Viability next, who said Little Fish may need a minor op (another one) to have the extra overgranulation tissue sliced off as it may have grown too much to shrink back any other way.
Meanwhile, he wrote us a prescription for betnovate, to try for two weeks first. Let's hope it works - I can't see her going for the slicing option myself, even with local anaesthetic. Looked at her various pressure sores and wasn't especially worried, so we will plug on with trying to get them healed up. He did mention finding some silicone socks for her too - but unfortunately my google-fu is failing me, and I can only find silicone socks for iPods and mobile phones. I suspect these may not in fact solve the problem.

Dietitian next - and although Little Fish has gained weight, she has gained it more slowly than before, so is coming back down the percentile charts which is good.

There was an element of "Little Fish was here" about the hospital nursery today.
See Mog's feet? She woke up for a bit whilst we were there, and we found her a mysterious plastic and metal curtain thing.
It's actually a cleverly designed musical toy - when the dangly bits (again with the technical descriptions) come into contact with the metal pole at the top, it plays music. So Mog could play music by performing her favourite activity - kicking. Apparently it comes with a switch option too, so could potentially be used to operate a battery operated toy or perhaps a tape recorder. Potential for fun there, I think.

More hard developmental play work.
Followed by some hard physical activity.
An hours' wait at the optometry clinic next, to get Little Fish's glasses adjusted. Made friends with a little girl with Down's Syndrome and her mother which helped to kill the time.

Over to the main hospital to get the Betnovate prescription filled. The pharmacy is over in the main hospital which is a fair walk from the children's hospital, especially when walking with a child insisting on doing loop the loops in her powerchair (something about all the many people going "aaaaahhh LOOOK!!! She's driving it all by herself"* which makes her show off for some reason, I can't think why). We arrive at the pharmacy, queue, and eventually come face to face with a very grumpy pharmacist. Who takes the form, does not make eye contact, circles a bit of the form and says "it's not filled in right, I can't accept this". The problem? No hospital number written on the form. Name, date of birth, address, consultant's name and all the rest of it, but no little hospital number in the corner. And no, she won't phone the ward to find it, or look it up on their records. So we take the form (all this has been discussed with no eye contact and not even a sympathetic shrug, just a "you're an idiot for wasting my time and that smell I can smell, is that you?" expression on her face. Back to the children's hospital past more ooohs and aaahs and several people who watch Little Fish push herself and then decide she needs to be helped, grab the handlebars without asking LF or myself, and then seem surprised when LF either stops dead in a panic or continues to drive without reference to where they think she wants to go. I actually had to shout at one woman that LF was completely fine, knew where she was going and how to get there, and that you can't drive a powerchair by pushing on the back handles anyway before she would let go. Great.

Dropped the prescription back with the nursery nurse, who said she would fill out the missing bit and take it herself; I'll collect the cream from her this afternoon (Friday). As we were queueing for the lift to go back home, we bumped into Mog's social worker. She came over to us with two other social workers and we had a bit of a chat about Mog before making introductions. The first social worker with her was looking at the girls with a quizzical look on her face - and turned out to be the hospital social worker involved with Mog when she first came to me, age 5 months. Hadn't seen her since, so that was nice. And the second social worker was looking at LF in utter disbelief - "Is that Little Fish [Birth Surname]?". "Not any more, it's Little Fish [Our Surname] now, but yes, she did used to be". Complete shock on her face - and small wonder; last time she had seen Little Fish it was to have her Baptised and then discharged into palliative fostercare age 3 months. I hope it was a good shock!

Home time finally, or would have been - I got caught up in the radio4 afternoon play, so had to drive a very long route home in order to hear it all.

Little Fish's day was made complete by a visit from Grannie. Great joy and celebration, and much eating of vegetables without even noticing in the thrill of having "Dat MY Nanny 'ere".

Plonked both girls in the bath with the help of our carer, then tossed Little Fish into bed. Mog should have followed, but objected strenuously until about 10PM when she finally allowed the chloral hydrate to get working and drifted off. And all was peaceful until 4AM, when she woke up not miserable but drowning and spluttering. Up into her chair (no fever though, hurrah) and a spot of suction which helped but not hugely. Il Divo, paracetamol and some repositioning helped some more, and an early extra dose of glycopyrrulate helped even more. She's now grouching and cross but neither fitting nor drowning which is just about good enough for me.

Having done all that I am of course now wide awake myself, something which I will regret later on today. I do like sunrises, but I much prefer to watch them in December than in July.
Tia

*Whilst I do understand that the sight of a small child driving her own powerchair is interesting, cute, different, unusual, and all the rest of it; your own child is sitting in a too small buggy and has a shaved head with a massive ear to ear scar - would you be impressed if I stood in the corridor shouting about that?

The big reveal

Do you really want to know?

It's clever.

Resourceful.

Non-toxic, good for the environment, and has a delicate scent.

Definitely vegetable in origin.


It is
(drum roll)
recycled tealeaves! They save all their used teabags and dry them out, and this is what comes out. Feels like sand, smells like tea, but unlike unused tealeaves, it doesn't stain the fingers. Probably not good if eaten in huge quantities but for children licking their fingers no harm at all.
Tia

Take Two Minutes

Lauren got me thinking yesterday (it took a while, but she managed it).

It's not always easy to find things to entertain our children with profound disabilities. There are all sorts of high tech stuff we have - touch screen computers, sensory equipment, etc., but none of it is terribly portable, and a lot of it takes some time to get set up. So, I was thinking about activities which take just two minutes to prepare, but which will occupy the child for considerably longer than that.

Here's my list - if other people can add to it then we might just have something useful for the summer holidays!

Take a bowl or roasting pan, half an inch of water and a big squirt of washing up liquid. Rest it on a wheelchair tray and enjoy splashing the bubbles about.

Half a dozen ice cubes on a wheelchair tray make good things to chase around too.

Feet in a bucket of water to kick or just soak.

Foil blankets, lametta and angel hair to hold and squidge or just to watch sparkle in the sun.

Dried pasta and sugar in a bowl to sift through and stir.

Dry cornflakes to crush

If you don't mind getting messy, then jelly or instant whip (US translation - Jello and Pudding!) to squish through fingers and toes.

Coloured feathers and different scraps of fabric for a nice soft feely bowl. We have an ostrich (or possibly emu, not sure) feather duster which makes a for a nice gentle tickle.

Grass to lie on under a tree to watch the patterns the light forms when the wind moves the leaves.

A sheepskin rug or pillow to snuggle on or rest feet and hands on, with small balls of wool or fluff to clutch in tight fists.

A regular fan, with ribbons and strips of foil and cellophane threaded into the protective grille, to form streamers blowing in the breeze.

Windchimes or temple bells hung from a washing line to kick or grab at.

For that matter, sheets or fleecy blankets hanging from a washing line to get all tangled up in. My girls like getting dripped on too but I wouldn't consider that a universal pleasure!

More for the washing line - a ball on a piece of string, especially a noisy ball. Careful positioning and it can be moved with the lightest of touch and will always swing back to the child again.

A groundsheet or piece of plastic, a bit of water and a lot of shower gel - very slippery and easy to kick and roll about on (top tip - when you want to pick the child up again slide them off it onto a towel first or it's like trying to lift greased spaghetti).

A bucket of smooth stones to stir or wriggle toes in, or have placed gently on an elbow, knee or tummy, to try to dislodge.

Netting (of the curtain or tutu-padding type) to lie under and watch the world through.

I'll add to this as I think of things - please add your own in the comments!
Tia

I apologise for eating the cake

Because it has clearly come back to haunt me.

Skipped Guides last night as too tired after our disturbed night. Into bed reasonably early, and thank goodness, as Mog started to need me at midnight. She had slipped down the bed and was coughing into the mattress. Hoiked her up the bed and left her to settle but no good - 1 AM and she was in serious need of chloral hydrate.

Sedated her and watched her calm down then staggered back to bed until she woke me again at 3. This time with a cough and a pant and a panic and a temp of 39.3c (102.7 for those who still use old money). Marvellous. More medicines and lots of comforting, and a silent prayer for temporary deafness to afflict the neighbours as I found myself playing runs of consecutive sixths on the piano to soothe her at 4AM.

It worked, she settled, and I slipped outside to admire thesein the early morning light. Should be a good crop this year.

Didn't go back to bed as she was still having a lot of seizures, so came back inside and watched her until she woke again at 6. Retook her temperature and now down to 35.5. (96f). Wrapped her up in our teddyskin rug and hoped she'd find a balance somewhere! Meanwhile noises off indicated that Little Fish was awake and ready to start the day.

Day two of Little Fish's hospital week. It's a hard life, all this assessment work
Really hard workFor part of today's assessment she even had to sit down and eat a whole cheese sandwich. Oh the inhumanity!

Had a message from Bob yesterday letting me know he'd be here today to do the gate. As we pulled in after Little Fish's assessment day, I noticed tyre marks on the lawn - signs that Bob had been and gone. I went to admire my new gate. And found thisI'm not sure what it is; it isn't a ramp, it definitely isn't a gate, it seems to be a small additional step on the deck but I'm not sure why. Its only purpose at present seems to be to make it even harder to get out of the back door than it was before. Joy.

Post this morning finally included a new date for Little Fish's op. The day after we fly to Italy for a week. Argh! So have cancelled it, making that the third cancellation, and will have to wait for the next one. Maybe by Christmas?

On a cheerier note, take a closer look at thisAnyone care to hazard a guess as to what that brown stuff is? Hint: it isn't sand or sawdust but feels a bit like both. Answers on a postcard please (or on a comment form. Although I do like postcards). I'll answer tomorrow. Or next week. Or quite possibly forget to answer at all, in which case, someone nag me.

And now I must go since although it feels like bedtime to me, Little Fish wants some serious entertaining.
Tia