Every Day a New Adventure

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

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

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

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

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

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

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

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

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

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

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

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

Tia

*Or words to that effect

Bunfight

Its a very special place to live, Abingdon. As the oldest continuously settled town in the country, a few rather special traditions might be not only justified, but expected. And one such tradition would be our Bun-Throwing.

Take any wildly exciting Royal Occasion. As readers may be aware, one such event happened recently, with the marriage of a certain two young people, one of whom may one day become our king. An event so important that my brother`s family felt it necessary to make the long trek back from Tanzania, purely in order to be in the country to mark the occasion. They may deny this, but we know the truth.

Take a moment to review the prettier pictures of the old County Hall (linked above under the bun throwing); sadly the bunting and general flaggery cannot disguise today`s scaffolding. And picture, not councillors in hard-hats peering through a gap in the scaffolding, but instead gloriously attired Town Mayor and Town Crier and various dignitaries all standing on the roof.

And then take one MayorAnd assorted others
A starving populace
And wind up those arms to throw.Amidst shouts of Long Live The Queen Throw Harder, Duncan!, watch those buns fly.
With arms raised high, the poor starving populace prepare to scrabble for any buns which reach them.
Those without fully functional arms choosing to use whatever catching tools they have at their disposal
We wait, watching, as those buns (surprisingly hard to photograph) spin over the crowd, falling mainly to the front of us. A particularly athletic councillor proves to have a very decent bowling arm, and, clinging to the scaffolding for support, he sends buns hurtling towards the back. And finally, success!
An Abingdon Bun! We scored two between the eight of us; not wonderful but enough for everyone to have a taste. Friends to the front caught thirteen and were off to celebrate with chips. Friends to the rear caught none, and were off to commiserate with chips.

A new refinement this year; initials on the buns - a very tasteful W and C for the new Duke and Duchess of Cambridge. And then the crowds dispersed, and we trundled our way home, heads full of flags and missed buns, and wondering if my mother really was the only person to be singing all the words to the second verse of the National Anthem before the bunfight began?

God save our gracious Queen!
Long live our noble Queen!
God save the Queen!
Send her victorious,
Happy and glorious,
Long to reign over us,
God save the Queen.

Thy choicest gifts in store
On her be pleased to pour,
Long may she reign.
May she defend our laws,
And give us ever cause,
To sing with heart and voice,
God save the Queen.

Tia

Would you rather?

WARNING: This is NOT a post for the weak-stomached. Non-carers may wish to back away now.

So, Sunday morning, there I was all dressed up for church, and then there I was, with the elderly contents of a suction pump cascading down my back and into my pants.

I thought I'd reached a new low. There's something about cold bodily fluids, so much more unpleasant than ones still at body temperature. Reach round into a wheelchair to straighten a child's hips and come up with a hand coated in poo? Annoying (where are those spare wheelchair covers?), but not too gross. That squidgy warm sensation when you realise the child on your lap has just overflowed their pad? Ho hum. Even the great tidal vomit of 2004* was somehow less disgusting in its freshness.

Stale suctionings were, I thought, a new low point. Until today. I emptied the nappy bin. The liner in the bin split as I was emptying it, and somehow, a used anal catheter leapt out of the bin and hit me in the face.

So my question for today is, which would you rather?
My supplemental question would be, anyone want to come and look after the girls whilst I go on holiday somewhere far, far away from here, with endless hot water and expensively luxuriant bath foam?

Tia

*The Great Tidal Vomit.

Long ago, when Mog was just a little wee thing, she used to sit on a Tumbleform on our kitchen table. Wedged between the wall and the 'fridge, she was beautifully safe, and perfectly placed to join in with our mealtimes. Goldie used to sit facing her, and I'd sit between them, where I could slow Goldie's eating down and try yet again to wedge another teaspoon of mush between Mog's reluctant lips.

We had savoury rice one night. Mince, rice, cheese, veg. Nicely prepared, deliciously scented, reasonably mashable, and apparently good enough that Goldie wanted two big bowls of it. Possibly a touch over seasoned; at any rate Goldie was also extremely thirsty and had a couple of drinks too.

Meal over, I pushed Goldie away from the table to reach around her and wipe up the debris. It was at this point which Goldie opened her mouth and poured forth not just two helpings of savoury rice, but also her lunch, and even the Weetabix, toast and poop goop she'd had for breakfast that morning. Together with all the drinks she'd had for the past 24 hours. With impressive velocity, she managed to hit the opposite wall. With remarkable spreading capacity, she managed to coat myself, the table, the floor, and the 'fridge. Oh, and herself too.

Mog, showing early promise for the daintily elegant child she would grow into, sat quietly beautiful, Piedro-booted feet tap dancing gently in the ocean of vomit, the rest of her totally untouched and apparently unaware and above such things.

Where do you start? Dripping with vomit, I stripped myself off rather than spread it further. I then stripped Goldie, and used the cleaner bits of her and my clothing to do an initial mop up. Depositing Goldie on the shower trolley, I hosed her down, mopped the floor and finished sorting the cupboards, and then, shivering, opened my bedroom door to find myself some clean clothes. I flung the door open and walked into my room. Heading for the wardrobe, I approached my large, ground floor, window. And realised that much of the population of two local secondary schools was walking down the road, staring back in at me. Dropping to the floor, I commando-crawled across the carpet, reached up towards my wardrobe and blindly tugged at whatever I could reach, throwing it on ducked down under the window and then attempting to gather what little dignity I had left and walking out of my room without a backwards glance.

I bought net curtains the next day.

Good news, bad news.

The good news is, it's snowing here. Beautiful, crisp, white, clean and fresh snow, falling softly and covering everything with a sound-proof blanket. Traffic noise hushed, footsteps silenced, the only sounds giggles of small children with snowballs and birds clamouring for food.

The bad news is, our weekend carers cancelled, Waitrose cancelled their delivery too, and most of our Christmas presents are apparently in Inverclyde.

The good news is, the milkman made it, and managed to bring bacon and eggs and other essential breakfast supplies as well.

The bad news is, the milk froze on the doorstep.The good news is, this reminded me of my childhood.

The bad news is, I don't remember this happening back then

The good news is, we still have plenty of milk and not too much of it dripped down behind the 'fridge where it will turn into evil-smelling cheese.

The bad news is, I had no contact from playscheme to say it had been cancelled.

The good news is, our morning carer turned up - an hour late, but in time to give Mog a shower and get her wrapped up.

More good news in the form of several weather forecasts all promising a foggy but snow free day, so we wrapped up warmly and hiked over to Mog's school to see if the playscheme was running. Even better news, it was!

I dropped the girls and step/fumble/stepped my way over to Waitrose. Bad news; I remembered I had not packed Little Fish a lunch for playscheme, so bought her a sandwich and made plans to trek back to school after going to the chemist.

Good news; playscheme rang and offered to cook her some pasta and sauce!

Bad news; I got to the chemist to ask for LF's prescription, and they told me that it won't be in until January 10th.

I point out that they have had the prescription request for two weeks, and that perhaps it might have been useful to tell me this sooner, as I now have just two doses left. They shrug.

I walk to other chemists, balk at the queue, and realise that I am wasting time; last time they couldn't get it, no other company could either and none of them keep it in stock as it has a limited shelf life. So I head over to the GP surgery, where I queue to speak to a receptionist. She directs me to the prescriptions lady; I join a different queue. Eventually I reach the front of the queue, with a new respect for the wonderful prescription lady who remains calm despite unending phone calls and queries and forgotten names of drugs and complicated spelling issues.

I explain the issue. She says she will speak to the doctor about prescribing an alternative. I sit. Thirty minutes later, someone else hands me the original prescription, together with a note claiming that Consult Pharmacy (extreme far end of town in opposite direction to home and playscheme) have it in stock. I hike over to Consult Pharmacy, who look at the prescription and tell me they will have to order it in. I am not best pleased with the Surgery at this point. They phone, and are promised delivery by tomorrow afternoon.

The bad news; as they phone I hear them read out the prescription and realise it is the wrong strength medication.

The good news; if they hadn't read it out over the phone I would not have noticed and would have been giving LF a double dose, and all I now have to do is give half the normal dose which means that one bottle will last twice as long.

By this point, it is snowing fairly heavily once again, and I am not altogether surprised when the playscheme supervisor rings me to say playscheme is closed.

The bad news; I'm now 1.5 miles from school and it'll take me a while to walk there.

The good news; I'm not the last parent to turn up.

The bad news; I then have to wait 15 minutes for staff to finish changing the girls so I can take them home.

The good news; I find the phone number for a local taxi firm which has accessible taxis.

The bad news; they have no accessible taxis running today.

The good news; by the time the girls are all changed and buttoned into coats and blankets, the snow has stopped.

The bad news; it's still cold, it's still a mile home, and the new snowfall has made it almost impossible for Little Fish to get any traction in her powerchair.

We do eventually get home, and collapse together onto a nice soft settee. Little Fish's lunch proves to be enough for all of us, I have some rather nice Apple Yvonne* in the 'fridge, and we don't have to go anywhere else today.

The bad news; the cats have apparently objected to the snow and messed on the floor.

The good news; I have cat litter and a tray, so make them up a toilet.

The bad news; they flee at the sight of this, out through the cat flap and sit under the hedge where they proceed to do the things cats need to do.

The good news; the snow is still jolly pretty and now that I am warm and can feel my toes again, there was a nice jolly epic-ness of the four hour hike I hadn't planned to do. And now it's snowing again.

I'm not entirely sure how we're going to get that bottle of oxybutinin tomorrow though... I am however considering the purchase of a milk-float, this apparently being more reliable than delivery lorries, post vans, and carers four wheel drive cars.
Tia

*Swedish Apple Charlotte a favourite here; cooked apple underneath with cornflakes, butter and sugar on the top. Had no cornflakes and so made it with porridge oats instead. No longer Swedish but vaguely Scottish, so renamed after my sister-in-law.

Day One

Today the first official day of our school holidays. Little Fish finished on Tuesday, Mog came home unwell on Monday and didn't manage the rest of the week, so I've had both girls at home for a few days anyway, but today was when the holidays were supposed to begin.

Not a bad first day in some respects; nice weather, lunch out, civilised children, an afternoon in town and phone calls confirming delivery of new buggy on Monday and new supportive insert ready for collection. Of course I missed the cut off for collection by ten minutes, so will either have to scramble to collect it before our 9.15 appointment (at home) on Monday or else leave it until after the buggy has been delivered. Which would be a pain, since ideally I'd like the buggy to be set up to fit it.

Oh, and the reason why we missed it and why we were in town? We were seeing the GP - Mog has decided to celebrate the start of the summer holidays with a chest infection.

Chicken Pox last year; we are not missing New Wine again so she's got 8 days to get over it.

Tia

Thursday

Grand plans for a nicely nothing kind of a day. Lunch with friends in the middle and a sort of peaceful floating around the edges.

Well, the lunch with friends happened and was lovely, but the peaceful floating was chipped and chipped away. Starting at 4.31 when Little Fish threw a Little Wobbly and had to be de-Nippy'd in a hurry.

She then settled back into bed, but I was then fairly awake. Time to potter about sorting laundry and emptying bins, taking advantage of the pre-dawn gloom to add embarrassing amounts of rubbish to the commual heap (our dustbin men collect all the rubbish from our street from a large pile at the end of our driveway. This is awkward when people need to come onto our drive but rather jolly handy when there are defunct hoovers and festering nappy sacks to be added to the pile). Coffee and emails and last night's washing up, and meds drawn up for the girls, and enjoying the quietness, deciding not to wake Little Fish until Mog's carer arrives; racing Mog to get dressed is a good motivator and cuts out some of the four year old faffiness we have to live with otherwise. And then the phone rings, and I realise it is now 7.36, and it is The Office informing me that our carer, the one due at 7.30, is off sick.

Panic mode: on. Mog is whisked into her clothes with almost burtal efficiency, and finds herself sitting in her wheelchair before she has realised she is awake. Little Fish is planted on a stool and finds herself having a large fruit smoothie via gastrostomy as she nibbles delicately on a piece of toast; no time to cajole her into eating more. A hairbrush is waved in the general direction of three heads, faces are de-crusted and somehow shoes are located. Mog's bus does not help matters by being early; I scramble her school kit together as they load her on and manage to produce it before they drive off. Little Fish plods on with her toast, refusing to be infected by her mother's hurry, and slowly, deliberately, she chews and swallows and consents to feet being splinted and be-shoed as she does so. And finally she is in her powerchair, wrapped up warmly, and we are inching our way to school, the last bit of toast in her mouth as we leave the house and somehow still being chewed as we squeak into school at the end of the queue and before the doors have been locked.

The photographer had a slot early in the morning, the only slot we could both make this week, so with Little Fish finally at school, I galloped home and then raced into town to go and look at pretty photographs. And as I left, the phone rang informing me the gasman was coming to quote for a new boiler as soon as I got home. Parked the bus, remembered I had no children with me so actually had to pay for parking, shocking. Burst into the photographer's studio, to find him looking at me in a slightly puzzled fashion, before consulting his diary, taking the last mouthful of a bacon sandwich and apologising for it not being Wednesday. Could I give him 15 minutes to set up please?

No problem, into the co-op and buy yummies for lunch, decide baking definitely not going to happen this morning and find a coffee cake, grab some ham for LF, and back around to the photographer.

Interlude. 60 photos whittled down to 25, then 11, and then a second mortgage raised to pay for the few we decided were best. They'll be ready "definitely by Christmas but possibly only just. Sorry."

Back home, via a new and enticing patisserie. A blueberry and raspberry torte (query: why is torte instantly more delicious sounding than tart? And what's the difference? Tart is margarine and almond essence and oranges, torte is butter and ground almonds and grand marnier? And is a sweet tart an oxymoron?), and I resist the many many variations on almond and sweet bread (not sweetbreads).

Dump food in kitchen Put the shopping away carefully, and I am halfway through finding the floor again when our cleaner arrives and, gently edging me out of the door, finds far more of it than has been visible for weeks, appearing at regular intervals with handfuls of clutter for me to redistribute put away.

Our new cleaner, she who has restored my bathroom to glory I never knew it formerly had, came back - a two hour visit half an hour before friends due for lunch. And if you think I turned her away, you're crazy. But it did mean when they arrived, the sitting room furniture was all piled in the middle of the room, great teetering stacks of clutter around the edges as our wonderful new cleaner actually cleaned underneath everything and not just vaguely around it. She even took the cushions off and hoovered underneath them. The finds she didn't immediately bin included seven picture dominoes, two unopened packets of crisps, half a dozen pens and an unread magazine from August. Oops.

It is, of course, in the middle of this process that our first friends arrive. Swiftly followed by the gas man, and then by our other friends. Our cleaner remains unruffled even by the addition of a busily helpful two year old, and continues to restore my sitting room to a clean and delightful freshness. The gasman and I take up a station in the kitchen, whilst friends post themselves through to the playroom and perch uncomfortably on the piano stool wrapping a delicate child in many layers of blankets rather than turn on the radiator. I'm such a great hostess.

They do appreciate the coffee cake though, much munching ensues as the gasman and I discuss the practicalities of replacing our asbestos laden boiler with something new and shinily efficient. Am intrigued to note that even with the asbestos removal, the quotation is substantially cheaper than the quote we received from Big National Gas Company a few months ago pre-asbestos issues. Shan't be using them then.

Finally the gasman goes, and the cleaner decides the sitting room is more or less up to her standards. She spends approximately three minutes in the bathroom bringing back the gleam she achieved on Monday, and departs in his wake. We head back to comfortable chairs and glistening surfaces. Bookcases which take me weeks to tidy have been ruthlessly straightened, space has somehow been found for pictures to be displayed not merely stacked, and the contrast between the rest of the room and my computer table (which I asked her not to touch) is embarrassingly obvious now.

Lunch happens. Conversation happens. We think of friends who are ill, friends with ill children. Marvel at the ability of more than one child to prove the doctors wrong yet again, and refuse to die despite being discharged in order to do so. Push more food onto each others' plates and at the same time discuss the differences diet and medication and medical conditions can make to poo. Drink tea and debate different cathing techniques and the benefits of a bladder washout with Domestos. Eat grapes and mince pies and talk about the difficulties which follow when your child doesn't die.

The phone rings intermittently; more appointments being set up, crowding December days until the 25th is beginning to look like our quietest day this month. Pity the therapists too; with three of us in the room the phone gets passed around, and one appointment becomes two or three.

A surprising lack of cats during our chat, and as friends bundle up to go I track them down, trapped in a bedroom. No puddles though, no piles of poo, despite having been in the bedroom all day long. Definite progress there. Or it would be definite progress, if one hadn't immediately celebrated freedom by spraying the front door whilst the other tackled the bathtub. At least they are consistent in where they go; the areas of the house where I need to watch my step are now limited to a handful. Did you know though that cat urine if frequently reapplied can dissolve floor varnish? I wouldn't recommend it as a stripper though; the fumes are not pretty.

And so friends go, cats are fed, children return from school, Mary Poppins is played again, the Advent book has another chapter, and we the curtains are drawn against the darkening night. Two girls and then myself into bed, and I am asleep before Mog.

So it wasn't the quiet floaty sort of day I'd semi-planned. And I didn't knit a row of Mog's cardigan - which needs finishing by Tuesday evening, in an ideal world. But any day which includes lunch, and ends with three of us sleeping peacefully can't be a bad day, no matter what gets thrown at us in the middle.

Tia

A day in the life of Little Fish

Little Fish is feeling jolly pleased with life at the moment. And since Little Jenny Wren has finished the "A Day In My Life" series, I thought I'd go for a day in LF's life instead.

So here's Little Fish's morning grin, awake 5 minutes and desperate to be out of bed and up and doing. It's hot work, sleeping in her brace and bonnet.
First stop, breakfast. Toast and butter "no crusts Mumma I not like them it your job to eat the crust", and a fruit cocktail through her tube.
And then time for a hairwash. We can't use the shower bench at the moment as the brace must not get wet. So since LF is a bit of a sweaty Betty, we are dunking what we can reach of her into our kitchen sink each morning.It's the highlight of her day.

Or has been, until this morning, when she realised that she really actually truly absolutely was going to school today!She thought she'd missed her chance when the bus trundled up as she was conditioning her hair, so was extra pleased to be going in our big red bus instead "You drive it Mummy I sit beyind it not my job driving the bus"
Just incase anyone was in any doubt about that.

And so to school, and a quick handover to staff who have now had half the class go through this operation at some point or another so are thankfully all too familiar with the new caring challenges the brace and wound management present.

Room on the midday bus to bring her home, but no time to go inside; instead back onto our bus to meet friends at Millets to do a lost property and medical necessities exchange.
Not our most elegant picnic ever, perhaps, but still popularMmmm, sausages!

And then silliness, and a demonstration of what happens if you let this toddler loose with a cameraAnd watch as his focus improvesbut his subject matter deteriorates.

The rest of the afternoon passed a bit like thisuntil it was time to reload the buses and run for home to beat Mog back from school.

And then some glueing and sticking and cutting and pasting, some reluctant eating of tea and some happier burping. A successful suppository (aren't you glad I don't photograph everything?), and finally into bed with a bit of Charlie and Lola to fall asleep by.
And a Little Fish confident and secure enough to hear our babysitter arrive, and wave me goodbye without a qualm. And unfortunately a Little Fish comfortable enough to fall asleep on her wrong side, so I will have to go in shortly and turn her over before I sleep myself.

A good day though. Nothing major, nothing hugely out of the ordinary, just life with time to enjoy it.
Tia

A Day in my Life

It's the 14th again, and so Jenny is kindly hosting A Day in my Life again. Many thanks.

We had a bit of a Groundhog Morning here; for a good hour or so my life consisted of wash hands, suction child, wash hands again, deal with incontinence, get half way through before washing hands again to suction child, return to incontinence issue to discover the need to start again there, get nearly cleaned up before having to suction again - two bottoms and one cough and just not enough hands. I calculated that I washed my hands at least 15 times that hour, and added in another 5 missed handwashes too. I think I have some intact skin somewhere, but I think it's reached the elbows.

Things did calm down after that, and I celebrated my reprieve from the endless handwash/child juggling routine with a nice solo bath. Bliss.

And then it was a beautiful Saturday morning, far too nice to stay in. So we blanketed up and set off into town.
It's a strange sight now.
Empty windows, closed doors. Here is where we used to find socks and lightbulbs, batteries and notebooks, vests and screws and felt tip pens. Growing up, here is where my wonderful little kilts with sewn in polyester vest came from - I did love those. And I can still remember the frustration of having put the jumper on first, and having to strip to get the vest and kilt properly in place. So pleased Ladybird will continue even if Woollies is no more.

Walking down through the precinct one defunct travel agents, one dead shoe shop, one closed children's clothing shop; every third shop either To Let or boarded up.

Down to the market square where one young man was valiantly trying to prove that the world could not be fixed or healed until every sinner has repented.
Round to the one remaining children's clothing shop, a quick dive in and out and two happy girls. Back towards the town centre,
And then on to Waitrose via the post box.
A nice mouthful of rare steak, courtesy of Waitrose Saturday tastings, and a brief meeting with Grannie and Grandad, also shopping, much to Little Fish's surprise.

And then a brisk walk home. We are thankful for these.
Newly created ramps, which mean we no longer need to use this one
to get back to our house. Now if the council would just fix the fence here
it might save our lawn from total destruction.

Home then, and a bit of a sulk about swapping out of the power chair into the manual.
Closesly supervised by one very sore cat.
It's good that he's got more energy. But scalping himself really isn't the best use of it. Perhaps he really is allergic to cat fur, and is trying to remove it all? I feel another trip to the vet coming along; I have piriton to give him, but he coughs and hisses and spits, and the stress of having to take the tablets causes him to scratch even harder - not really the plan.

Lunch, and then time for a break. I took the computer, Mog chose the music, Little Fish took the camera.
I think she's improving.

I also think I need to lose weight.

Little Fish evidently felt the need to prove that our floor is occasionally visible.
And that we had been using this far too much this morning.
And then it was time to play with our latest purchases.
LF loves puzzles. That's not true; LF loves getting other people to do her puzzles. She can do the very basic "put this piece of wood into that wood shaped hole" type puzzle, but the more complicated jigsaw style ones leave her confused and cross. So when she spotted this one earlier I thought it might be a good halfway puzzle.

I was wrong.

How can a child who can count her way up to 21 and back (the number of scoops of powder we use to mix up Mog's feed), who can add 2 girls and 1 mummy to get 3 peoples, who can add 2 boys to get 5 peoples, who can prime the feed pump and set it going, build a tower, and whitter on for hours effectively communicate her thought processes, be so totally unable to put one shape next to another shape and match them up? She used to be good at this (for her age); and now she seems to have stagnated.

Hey ho, another set of puzzle pieces to pass over to anyone foolish enough to sit down next to it.

Meanwhile, I think it's safe to say that Mog approves of the socks we found for her Hensinger.
And then it was teatime, and "I sit on your lap and you feed me tonight, please precious Mummy?", and Upsy Daisy Yoghurt time, and sit on the potty time, and have a super long phonecall with a friend time, and then bedtime for small people.

And now Comeback is prowling around my ankles mewing for his medication, two girls are sleeping sweetly, Julian Lloyd Webber has just finished playing a 'Cello medley to us all, Goway has vanished into a tight corner somewhere, and it is time I found my own bed too.

And that's A Day in my Life for this month.
Tia

A Day in my Life

It's the 14th again, and visiting Little Jenny Wren's site reminds me that it is time for A Day In My Life.

I had another couple of posts mulling about but I shall shelve them for now and blog our day for you.

We started with an inadvertent lie-in; for some reason my phone was on silent so instead of being woken by the alarm I was woken by the carer hammering gently tapping on the front door to be let in.

I dragged my weary body tiptoed gently to the door to let her in, then retreated to get dressed myself as she gathered clothes for Mog. Mog meanwhile was sleeping peacefully, so peacefully that I had to check for myself she was actually breathing. She was. Beautifully, calmly, silently, without struggling. So we mutually agreed to leave her to sleep, and our carer instead helped Little Fish with her breakfast and then into her clothes. I fought the urge to go back to bed and entertained the carer by insisting on two spoons of coffee in my mug.

Mog did wake up before the carer left, so we threw some clothes onto her too, having made the decision that she would not be going to school today.

An almost peaceful hour followed; Mog went back to sleep, I washed my hair, and Little Fish asked me what I was doing about six hundred billion times, and then asked me why six hundred billion and one plus infinity times.

And then we loaded up the bus and headed off to hospital for an outpatients appointment. Yesterday, different hospital, Little Fish and I ended up parking on a muddy verge as no spots left in the carpark. Today, no spaces in the disabled parking zone, no spaces in the children's hospital carpark, but thankfully only a fifteen minute wait to grab a space in the neuro carpark, and only a 1 minute indoor walk between that and the children's hospital.

Up in the lift "maybe we might be having time to play, Mumma?" and much to Little Fish's pleasure, the clinic was running late enough that we were nicely in time for her to ignore all the toys and insist on being bounced on my lap holding half an old telephone set.

And then a weigh-in - by the same nurse who weighed her yesterday at the orthopaedic hospital - and then finally time to see the paediatrician.

Yesterday one of the doctors looking at Little Fish listened extra hard to her chest, and got that look on her face. You know the one; it starts with a "mm hmmm" and moves to a "wait what?" and then goes on to a "hmmmm don't remember reading THIS in her notes" and then a panicked "oh what do I say to the parent, she's sitting right here watching me, must be reassuring, oh too late she knows something's wrong now right here goes." And then with a bright, caring, smile, the doctor said "Has anyone told you she has a heart murmur?"

No. No one has thought to mention that before. Actually, I'm pretty sure no one has picked this up before; it is the sort of thing which would be listed on adoption medical papers and it wasn't. And given the number of people involved with Little Fish's medical bits and pieces, the fact that it has never been mentioned quite possibly means that it wasn't there before. Or that everyone assumed someone else was doing something about it.

So, today the paed had a good listen for himself. He listened to different parts of the heart from different positions on LF's chest with LF's arms and body in different positions. And then had a bit of a "Hmmm" himself. The good news is, he isn't really worried, and apparently if Little Fish were an ordinary child her age he would just want to monitor it periodically with the expectation that she would grow out of it by the age of 5 or so. But of course Little Fish is not an ordinary child, and her body doesn't work in the same way as other children's do, and in addition she is now waiting for major surgery. So he has referred her to a cardiologist. Ho hum.

This means that between the two girls, we now see two neurologists, one neurosurgeon, two respiratory doctors, one orthopaedic surgeon and one spinal consultant, one urology consultant, one general surgeon, and are now awaiting appointments with one ENT consultant and one cardiologist. Add in all the many nurses and thank goodness we don't need to keep seeing all the social workers too!

So, appointment over, we have time for a quick bite of lunch in the atrium before heading back towards home. For some reason, it wasn't popular this lunch time. Someone had beaten us to all the chocolate and almond pastries, perhaps everyone else shares my opinion that nothing else is worth eating from there.

Little Fish did not share my opinion, and enjoyed a sandwich in her chewer.This is a clever little device with a hardy mesh bag attached to a tough plastic handle. All finger foods can be put into the bag, and she can then suck and chew to create her own purees. It isn't pretty to watch, but it is excellent feeding therapy, and she prefers it to having to eat cold mush everywhere we go. Hopefully by the time she is old enough to be embarrassed about needing it she will have made enough strides with her therapy to be eating ordinary food again.

Mog and I then dropped Little Fish at preschool, and walked out, her wails echoing down the corridors once more. I wish I knew what this was all about. She was absolutely fine about being left last term. After Goldie's inquest she was quite upset and feeling a little insecure, but she seemed to have settled down into school and preschool again a bit more before the end of term. And now she is worried all morning about the prospect of having to go. "I not go, Mumma, I too tired" "I too sad, I a bit hurty" "Maybe you and me stay here together, Mumma?" I know she isn't of statutory school age, I could take her out of both settings and keep her at home with me. I know too that I could go and stay with her in both places. But, 30 seconds after I have gone she is perfectly happy - not just resigned to her fate, but happy. And when I pick her up she's delighted to see me but again not superclingy and overwhelmed, just pleased I am back. So I really don't know what's going on there.

However, having waited until I could hear her being happy again, Mog and I came home and snuggled up together to watch her copy of "The King and I". Mog evidently felt it was quite relaxing.And then it was time for a cold walk back to preschool to collect our Little Fish.

Back home again, and time for our speech therapist to visit, bringing with her an assistant who is going to carry out a feeding therapy programme for Little Fish for the next six weeks. Lots of blowing bubbles, making faces, and licking chocolate spread off her lips, and then time for them to go and for us to think about tea and pyjamas and bed.

And so they did, and so we did, and then Little Fish was settled . And then I had some food, and Mog had some music, and now Mog is also settled in her chairand has that "leave me alone I need to sleep" look about her.

She's not the only one, and that is our 14th for this month.
Tia