Thursday, 29 April 2010

Positive Spin

The fact that Mog's stridor was back last night meant that we could distinguish between central and obstructive apnoeas without even looking. The energetic amongst you could make this into a game - can you reach the monitor from the start of the silence before the monitor starts to alarm, or will it beep before you get there? The tireder among you can simply enjoy the stridor-free silence as a calm before the alarm storm.

The fact that Mog did not demonstrate any of her bigger impressive episodes on either night of her sleep study means she doesn't do them every night. I'm still not quite sure why that doesn't feel more positive - it's very odd feeling annoyed with your child for not stopping breathing.

I went out last night, and came back to find my sitter had had her first non-breathing-patient experience since she left nursing five years ago. It's an equally odd feeling feeling pleased your child did stop breathing - at least when someone else could see it.

I'm struggling to find something positive about the other five last night though. Seems a bit over the top to me...


Wednesday, 28 April 2010

Puncho, Mamma!

"Hey! Grass!"You leave a soil bed when you go to school in the morning, and when you get back in the afternoon someone has laid a green carpet. No warning, not fair!

She wouldn't repeat her hands on hips utter outrage pose for the camera, but she stayed fairly bemused all afternoon. "Oo, you've planted a tree," said our carer - who was a little embarrassed when she realised that bit had been there since January and only the grass was new.

"Puncho, Mamma!" called Little Fish as we walked into the house, "Puncho, Mog! Mumma, Mamma, say Puncho me!"


Tick, tick, what might she have been learning today.

Ah - "Bonjour, Little Fish!"
"Puncho, Mamma!"

Tuesday, 27 April 2010

The good, the bad, and the ugly.

The good
  • Mog's CT scan shows no further brain damage nor anything untowards (ok the massive brain damage she already has hasn't healed itself, but none of us were looking for that).
  • Little Fish's newest Nippy mask is still not marking her anywhere.
  • My front garden will have grass covering it again from tomorrow.
  • Three new fish seem to be surviving in our tank.
  • I only have half a load of washing unwashed.
  • The sun is shining, summer uniforms are being unpacked for school, flowers and blossoms and proper Spring really really actually is here at last.
  • Mum and Dad are back home again.
  • Little Fish is so envious of Mog's recent stay in Helen House that she wants me to book them both in together, and for me to drop them off then pick them up later. How she'll feel about that when it comes to it I'm not sure, but I shall be testing her resolution at some point in the next few months I suspect.
  • Little Fish wants to be a Rainbow.
  • I have new books by a new (to me) author loaned by a friend.
  • Life is starting to feel as though it might just be settling into some kind of a routine again.
The bad
  • Gotcha caught a mouse and left it in the hallway for me.
  • Lots of friends dealing with more than their fair share of rubbishery.
  • I've lost several small but urgent pieces of paperwork, and have lost an argument with British Gas too.
And the ugly
  • My 90 year old Grandmother was burgled over the weekend. Thankfully unhurt, just a television taken. Could have been very much worse. But still...

Monday, 26 April 2010

The Great Guide Getaway

What does a Great Guide Getaway look like?

For Mog, it looks like this
(small one in a blue raincoat, second row from the top).

And for Little Fish, it looks like this.
And for the Guides?

I have no idea - we didn't see them all day! I assume this means they were all busy having a good time.

Our own stay got off to an interesting start; we arrived at the hotel, checked in, and were handed our keys. "Family room, madam". No - we had specifically booked an Accessible room. "Oh yes, there's a lift and there's lots of space in the room for you." No, an ACCESSIBLE room. Two girls in WHEELCHAIRS. An Adapted Room. "Just one moment, Madam"

45 minutes and a pint of diet coke later, the computer system having apparently been upgraded to one which did not carry over the minor information that we needed an accessible bedroom, we were faced with several options. We could go back to the room we'd booked originally, before deciding to pay extra for the bedroom with wheelchair access (they only make the 6 bedded rooms accessible, not the 4 bedded ones) and be refunded the difference. We could take two 3 bedded accessible rooms. Or we could keep the 6 bedded room but also be given a 3 bedded accessible room so we could use the showering facilities in it, but it was unfortunately on a different floor of the hotel. We took the 6 bedded room and decided showers were not essential.

A minor annoyance in the grand scheme of things. Not helped by the booker-in, who really didn't understand the difference between an accessible room and an inaccessible one. And, for future reference, "Lots of space" equates to eight inches between the foot of the double bed and the foot of the sofa bed, with two feet between the double bed and the bunk bed. Hmmm.

So, into swimming costumes and back up to reception to grab wristbands for the swimming pool. Which, thanks to the Guides Getting Away, was going to be closing 4 hours earlier than usual, 1 hour earlier than we'd been told. Twenty minutes in a hot tub then, before tea. Not such a problem; if we'd spent any longer than neither T (accompanying friend) nor I would have made it out of the pool and down the stairs to the girls' wheelchairs.

A decentish night's sleep; the closeness of the beds making it easy for me to reach the silence button on Mog's alarm before it woke anyone else. Little Fish ecstatic to be spending the night in bed with Mog, T and I thankful that the girls were so keen to share and that neither of us therefore had to take the top bunk.

And then a day in the park. Bueatiful day, fantastically helpful guest services who sorted out easy access bands for us all, so no queuing (shame about the Guides). Slow rides for Little Fish, Whizzy rides for Mog, free tea and coffee for the Grownups and not a Guide in sight. Two heavyish rain showers; we missed the first by cunningly entering an indoor ride just before it started. The second made up for it. Take a look at that first photo. This one.

See that beautiful blue sky? We didn't - just as the ride got to its highest point, with Mog doing her wide-mouthed-frog smile, and fellow Guider screaming in our ear, the heavens opened and the rain fell not with a gentle pitter patter nor yet a steady beat, but with the curtain of water effect you get when a perfectly level bathtub upends itself. Up, up, facing the ground with a sheet of water hammering at the back of our necks, then down, down, to get the hair well rinsed, up, up, the other way, with the force of the rain closing eyes and running into nostrils... Mog loved it!

We tipped the puddles out of her wheelchair, wrung the cushions out and plonked her back inside, before racing for shelter in a fairground stall. The path, which had been damp before, turned itself into a river running over our shoes and up our ankles. Our very own personal monsoon.

And then it stopped, as suddenly as it had started, and we wondered why we'd avoided the ride we'd decided not to do just 30 minutes before - the one where we didn't want to get soaked.

Coffee time. And then home time; two very tired but happy girls in pyjamas in the back of the bus, two tired adults arguing with the sat nav. So, we didn't see much of the Guides - guess they really did Getaway. But a good time for the rest of us. And we'll be back.


Sunday, 25 April 2010

So, did Mog perform for us on Friday night, or did we end up taking the study kit with us to Alton Towers?

Did Mog perform on Saturday night or was taking it a waste of time?

How is it possible that the first night in a month where the alarms didn't sound at all was cause not for celebration but frustration?

Saturday night she dipped often Enough to have me sleeping the wrong way around in bed, arm stretched over to the sofabed two sisters shared, cancelling the alarm before anyone woke up. But she just tipped the alarm and bounced back; we therefore have beautifully recorded proof that her episodes are minor, infrequent, and self resolving. I wish that were the truth.

Excellent weekend despite the 600 Guides we shared it with. Fun times and now utter exhaustion. More tomorrow. I hope.

How can

Friday, 23 April 2010


One hundred years of Guiding. One hundred and fifty zillion (give or take) ways to celebrate. So we're taking the girls to Alton Towers. They, and the majority of leaders, will be camping on the lawn. Tomorrow night. A single digit Celsius night, with rain forecast for Sunday, when they'll be spending the day in the park. Nice. We three are ducking out of the chilly bit and will be living it up in a rather large hotel room. Now that's more like it. Mum was supposed to be accompanying us as Guider in Charge; she's done most of the planning and sorting out and pre-leaving work, and then skipped out of the country and arranged a volcanic eruption to keep her on a different continent. Some people...

Which leaves four leaders to camp and myself to laugh at them all; should be plenty really. Doesn't quite feel like plenty right now. Little minor worries like, oops, all these health forms are blank, wonder where the ones all the parents have filled in are? And, oo, we have twenty people camping and tentage for eighteen. And, oh, Alton Towers say all tent pegs must be less than six inches long but all our pegs are seven inches, and the camping shop says all their tent pegs are seven or nine inches long too. And , eek, what have we forgotten, and ugh, so much packing for one night away.

And then throw in a sleep study tonight - Mog is all wired up and under strict orders to perform as she usually does, not as she usually does for a sleep study. So far she's managed to flood the lower half of the bed, and then I've managed to flood the upper half with feed. So that's going well then.So far it's five to ten and she's still awake. Actually getting to sleep would be a start. Once she is asleep, either she performs well, giving them an accurate picture of what she manages to do, and giving me a rotten night's sleep, or she sleeps well, giving me a better night's sleep but giving the medics an unhelpful study. We have the option of repeating the process tomorrow night should she fail to perform tonight, but I'd rather not have to lug the kit to a hotel (and risk leaving it there). A friend just suggested that, if she does have a really decent night, we steal the kit and make every night sleep study night; cover her with stretchy bands and ECG stickers, and watch her breathing beautifully. It's a thought.

Meanwhile, although I've found all the Guiding stuff, I've failed massively as far as packing is concerned. The bus is full of our usual flotsam and needs emptying, the suitcases are full of cat, which needs replacing with clothing. The kitlist is absent and the uniforms are creased. I had better go and do something about some of that really.


Wednesday, 21 April 2010

What not to blog

So much goes unmentioned here.

Little stuff; I've just cut Little Fish's hair, we bought new fish fr the fish tank today, and it turns out I really don't make great meatballs.

Slightly Bigger stuff; pressure sores where there didn't ought to be sores, a seemingly neverending backlog of appointments to chase, tweak, rearrange, attend, miss (oops).

Tedious stuff; how it's possible to feel worse after a decent night's sleep than it is after night after night of no sleep. And how angry it is possible to get with people who take a decent night's sleep for granted, and with people who are envious of the fact that we get to use Helen House, refusing to actually think about whether they'd really like their child to qualify, knowing what the criteria for using a children's hospice is. And how angry it is also possible to get with people who, well, just people really! Incandescent woman bites her tongue (and blames the rest of the world for the sore tongue too).

Volcanic stuff; my parents still trapped in Tanzania. Latest estimates have them out there until May; rather an inconvenience when, work issues aside, they are booked to Guide Camp and Scout Camp and a hundred and one other duties and delights between now and then. I now appear to be part-funding a Scout trip to watch the rugby; not quite sure how that happened!

Other people's stuff; the stories I can't tell.

Stuff which just doesn't seem to have a story behind it
And stuff I'm trying to avoid thinking about until after all the results are in.

We're still here though. Mog is having a lovely time at Helen House. She had a good night, only two episode. Two's enough for me though; I was as worried that she wouldn't demonstrate her problems (and thus make me look incredibly foolish and over-worried) as I was that she'd have too many of them. The spies are out and inform me she's having a lovely evening too. And a cryptic one for A - K would very much like you to know that she was not only on time but earlier than the rest of us last night!


Monday, 19 April 2010

Honest Blogger?

Sara, from over at The Heart of Our Tribe, kindly nominated me for an Honesty Award. Do go and visit Sara, I know she could use some encouragement right now.

Apparently I need to list ten honest things about myself. So, in no particular order,

  1. I am tired
  2. My parents are currently trapped in Tanzania and can't get home until 'planes are flying back into the UK again. We have missed them, Little Fish especially.
  3. I am a shoplifter. This afternoon I walked into Mothercare with the girls, hung a load of school uniform off Mog's wheelchair, queued up to pay and walked out with two pairs of trousers still on her chair. I did return the trousers, but couldn't get eye contact out of the shop assistant, so just laid them on the counter and walked off. If the CCTV picked up our exit, I do hope it also picked up our re-entry.
  4. There is no sweeter sound than that of a small child breathing easily whilst fast asleep.
  5. I have a one inch long fish. He is the sole survivor of a friend's tank, transferred into our tank and all our fish died. I bought new fish last week, and they were all found dead one morning, sticking to the filter. There's the possibility that he is just incredibly hardy, but we suspect he may in fact be the world's smallest serial killer.
  6. I have a sneaking suspicion that this list is incredibly boring to read.
  7. Too many of my friends have lost a child (or more than one) this year.
  8. Helen House have just offered us three nights for Mog from tomorrow. Sleep will be hugely welcome. I am however tired at both the thought of packing for Mog, and the forthcoming tantrums from Little Fish, who went off to bed complaining that it wasn't fair and that she wanted to stay there too.
  9. I had an argument with a friend an acquaintance this morning who was envious of the fact we get to use Helen House and refused to admit that just possibly she might want to be happy about the fact her child did not meet the qualifying criteria for hospice care. This makes me cross. And that makes me cross with myself.
  10. The daffodils and tulips and primroses are blooming beautifully in my garden, and the sun shining down on them makes me realise we are actually having a Spring this year, new life, new hope. I used to love Winter but it turns out I am starting to crave the sun. Does this mean I'm getting old?
  11. I am tired
And now I need to nominate some other bloggers. Sara has included a few bloggers I would otherwise have included in my list, so I will nominate
Jophie's Jungle.
the Henn House
Smiles and Trials
Sarah's Covenant Homes

Stop by, if you don't already know them.

There's a chance of sleep at some point in the next few days. I might be slightly more inspired as a result. Thanks for bearing with me.

Saturday, 17 April 2010

Some Saturday

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

Well, that's the theory anyway.

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

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

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

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

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

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

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

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

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

Mutter mightily.

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

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

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

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

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

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


Friday, 16 April 2010

Lasting impressions

Playscheme today for both girls. An empty house - bliss.

Playscheme happens in Mog's school, which was also Goldy's school for a while. For a long time, Goldie's pictures lined the corridors - photographs of her riding her trike in the snow, doing some "traditional Tudor wheelchair dancing", taking in part in Christmas plays, just generally being part of the school. Over time, the coridor displays have gradually changed, swapping the class of '05 for more recent displays.

It's got harder walking down the coridor; I know memories aren't erased as the displays are replaced, but they're photos I don't see at home, different pictures, different glimpses of wild hair and shiny eyes and glee glee glee. Last time I walked the coridor, the last photo had gone, school well and truly moved on. As it should; it would be a little hard on the newer children if their achievements were never marked. But still, a little difficult to be reminded there won't be new memories ever.

And so today I collected the girls from playscheme, coming not down the main corridor but through the pupil entrance. A few minutes early, I paused to look up at the mural, made a few years ago, when Goldie was a pupil. It's not a picture I get a close look at very often; parents don't tend to use that entrance. I hadn't appreciated the trees and grass were made using pupil handprints, although I do remember the whole school being involved at the time. Looking closer, I realised all the handprints were marked with their owners' initials. I also realised there were an awful lot of children whose initials I couldn't translate into names. But, tucked in amongst the DCs and JWs was one set of initials very familiar and totally unique. So her face may have gone from the walls, but I think it's fair to say she will always have a hand in the school. That'll do me.


Thursday, 15 April 2010

Overdosing on reality.

So I'm not sure that watching programmes about Great Ormond Street Hospital's PICU department and ethics committee is the best plan at the moment. Especially when one of the doctors highlighted appears to believe that children who are disabled, doubly incontinent, with learning disabilities, are not fully human and should therefore be excluded from his view that life is sacred. I think I know a few children who might disagree with that.

It's also not a great idea to watch a programme based in a hospital when you have a ventilator, a feed pump, and a SATs monitor running. Their alarms will be indistinguishable, and you will spend the evening either jumping up unnecessarily or criticising the nurse talking to camera instead of dealing with the alarm, only to realise the alarms are somewhat more local.

And then, Googling about for information on some of Mog's newer habits, I came across this article, "Indicators of Life Expectancy for Children with Functional and Cognitive Impairments." Which contains the following handy information "An 11-year follow-up study of 128,248 individuals ... indicated that the following factors are associated with a very short life expectancy: immobility; an inability to roll over; limited arm-hand use; and an inability to self-feed... Children who lived to age 1 year or older had higher survival rates, but survival was less than 11 years."

And we're in the middle of some difficult times for Mog. She's very happy, not currently ill, but not breathing any better at night (although thankfully the new intelligent SATs monitor gives us a slightly more peaceful night - I'm only up 3-4 times a night not 8-12), and just showing a few signs that she's not quite where she was a few months ago.

I'd be lying if I said I wasn't worried.

UPDATE: I like this article Swift posted as a comment far better!


Wednesday, 14 April 2010

Bitty day

One gardener turned up today- the first fine Wednesday since Autumn! Little Fish was very keen to supervise him, and he seemed surprisingly pleased to have the company. I'm not sure what the world thought about her refusal to eat lunch if she couldn't watch the gardener.But hey, she had someone else to whitter at for two hours; I'm not complaining!

Gardener very excited about the new front garden and will be coming back next week with turf. The cats very excited about the newly dug over front garden, and are coming back frequently with full bowels and bladders. Fertiliser?


Tuesday, 13 April 2010


Playscheme this morning. And I only had to remortgage half the house to pay for it. Still, I'm not sure there is a price too high for the seven uninterrupted, child-free hours.

We'll make that six and a half, as I got the timing wrong and turned up half an hour late. Oops.

Still, home to an empty and relatively tidy house. No chatter, no need to answer three hundred "Mumma?"s, no need to pick up the crayons and remove the water and flatten the playdough and repair the books and well, you get the picture.

A van parked up outside our house, blocking our driveway. I watched it for a while, wondering whether I should go out and mention the fact they were blocking the driveway. And then I decided that as I can't park there anyway, and that I wasn't expecting visitors, I could in fact just sit down and not have to do anything.

And then the doorbell went - "can we have some water, please, Missus?" Hmmm. I am naturally delighted they've come to fix our driveway so we can actually access it at last. But surely it might have made more sense (or even been common courtesy) to let me know first? I know I'm not the one paying for the work, but I like to think I have some kind of a say in things.

No matter; they're here, and my peaceful day doing nothing is now replaced with a productive, but less peaceful day watching (and hearing) men with angle grindersflatten and smooth (sort of; I'd not say it was the best job ever) the lumps and bumps, add a couple of food extra concrete, and dig spades into my phone cables. They still sort of work; forgive me if I don't get back to you, my connection now appears to be intermittent. And the cable's embedded into two foot of concrete.

They packed up about an hour before I needed to go and fetch the girls, leaving a bit of a botched repair job but a very very beautifully tidy and smooth new lot of concrete, joined and blended and polished and clearly going to be virtually indistinguishable from the original once it had gone off.

And then the neighbours knocked to point out the chap delivering the "any scrap metals?" leaflet had walked right through the new concrete - not just one step but three - and then walked up the ramp, knocking the concrete off his boots as he walked.

So, out with the trowel and footprints smoothed into lumpy pudding, the best finish I could get. And then the cat decided to walk across the very smoothest part of the pudding, at which point I gave up. It's still a little soggy - anyone want to come and write slogans in it for me?

Mad day tomorrow with appointments at two different hospitals and interestingly complex childcare arrangements. But for now, one child asleep, one being hoisted into bed (by someone else!) as I type this; there might be some kind of peace on its way shortly.

It's very quiet in the house - too quiet; the boiler's gone out for the second time today, third time this week. This could be interesting; it isn't repairable or serviceable and neither does anyone want to come and replace it for us as it contains asbestos. Does anyone else feel as though they tick one job off their list only for it to be replaced by two or three, each bigger than the last?

Picture unrelated but apparently she loves him acos he is her favourite and her best.


Monday, 12 April 2010

Bracing ourselves

So, how exactly do you sell the idea of a spinal brace to a five year old? "We hope it might mean you won't need surgery on your back until you're a bit older" doesn't really cut it, when the short term consequences are that you're going to find it impossible to bend, much harder to self-propel, it's going to be hot and sweaty and probably won't work anyway. "It's red like your school uniform" doesn't really help much, especially in the school holidays. And "Your big sister had one just like it" isn't terribly reassuring when you don't really remember your big sister all that well any more.

"We're going to go and do some nice things and then have lunch in a dinner shop before we go to hospital to pick up your brace" works to get her out of the front door at least; always useful when the cleaner is trying desperately to clean around a small, tantrum throwing tornado of a child.

Looking at children's clothing and just mentioning that the brace will be big, and that she'll probably need new T-shirts and maybe some new jumpers too proves to be quite the incentive, especially when actually buying them is banned until the brace is on.

And, by the time lunch was ordered at the not especially nice dinner shop but the one which does sausage egg and chips, which is what the brace-wearer-to-be fancied, the brace was a fairly exciting prospect. Job done.

And then the phone rang. "Sorry, Mr Orthotist is off sick today, so your appointment has been cancelled." It's rearranged for next week, but that means missing an afternoon at school, and it means we missed out on meeting up with friends today for no reason whatsoever.



Sunday, 11 April 2010

Rumours of Bluebells have been greatly Exaggerated.

We went in search of Spring this afternoon.I think
We may
found it!
Photos (mostly) by Little Fish
who seems to be proving the need for the brace she's getting tomorrow by resting her head on her armrest most of the day.
She didn't do badly though!
No bluebells yet, but the first picnic of the year, in idyllic and almost empty Harcourt; just ourselves, the peacocks, and a handful of other visitors. After climbing the hill we had the place to ourselves, except for one man who appeared just as I was pointing out the "pretty cowslips" to the girls, at which point he snuck up behind me, said "Primroses" in a firm but even tone, and walked away again quickly before I could deck him with one of the coppice trimmings. Oops.


Saturday, 10 April 2010

Puss on wheels

Little Fish considering a change of nickname
and insisting, on the hottest day so far this year (OK that's admittedly not saying very much)
on donning her furry black catsuit for a trip to the park.
It's fun being five!

Friday, 9 April 2010


Two mothers discussing two young children. Two parents sharing their frustrations that their beautiful daughters were so stubborn, strong willed, difficult to reason with, prone to temper tantrums, and generally obnoxious but only when not in the company of others. So far, so normal.*

That's from the inside, not really looking out. From the outside, looking in; Two mothers watching two delightful children with a fairly spectacular array of physical disabilities and medical problems between them, complaining not about the bits the world assumes would be difficult - the disabilities and the medical stuff - but about the normal every day grind of bringing up children who turn out not to be as malleable as the dolls we used to mind in childhood.


*At least I hope it's normal, please don't disabuse me.

Thursday, 8 April 2010

Driving Lessons

Keeping one wheel on the white line.

Little Fish doubly tired this evening, having chosen to double up most activities and do them in both powered and manual chairs. Hurrah for wheelchai services volunteers, who have stretched and shrunk and adjusted her powerchair to make it fit her post surgical shape. They did mention something about trying to sort the castors on her manual too; I hope that comes off tomorrow.

Sitting in a noisy sports hall on hard wooden benches is not something I've done since avoiding PE lessons at school. It is surprisingly exhausting.


Wednesday, 7 April 2010

Good News, Bad News...

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

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

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

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

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

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

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

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


Tuesday, 6 April 2010

Little Fish Chat

On being served with a plate of very yummy vegetable lasagne:
she -"I are not liking this"
me - "Lola likes this a lot. This is Lola's favourite and her best.*"
she - "I do not agree with Lola."

Our visitors have brought a selection of new (to LF) DVDs with them. Little Fish has fallen heavily for one in particular, and after watching it a few times has memorised the theme tune, most of the dialogue for most of the episodes, and, rather unfortunately, is adamant that she needs a new Toy Cupboard just like the one in one of the stories. She will not be put off by the fact that this is a cartoon and the cupboard in question does not actually exist.

I say she's memorised the dialogue and theme tune. It's not quite true. She's got Mummy Pig and Daddy Pig and brother George and best friend Suzi down pat. But the heroine herself, I'm not quite sure what she'd think about her new name. Introducing "Peppered Pork!" This has the unfortunate side effect of making me hungry every time she watches.


Monday, 5 April 2010

1Happy Easter!

Two years ago, we celebrated in style in Florida.

One year ago, we celebrated more gently in Switzerland.

This year taking life easier yet; friends visiting but very firmly home-based. Inspired by visiting friend, we spent much of yesterday digging out clearing the sunroom to make it a beautiful space to eat our Easter lunch in. It seemed a shame really, when, room having been cleaned and polished, floor gleaming, table shining and covered with cloth and flowers, girls imported, garden doors open to catch the splendour of spring, I then dragged out of the oven one somewhat overcooked veggie lasagne and realised I had forgotten to make any kind of side dishes whatsoever, and that pudding would not be the beautiful creation I'd envisaged, but rather a Waitrose bag full of differently sized Easter Eggs. Ah well. Flavoured with friendship and seasoned by the successful cleaning, it still tasted pretty good to most of us. Little Fish, oddly, decided crunchy green beans were the best bit and refused the pasta and cheese. And Mog had a droplet of tomato sauce which she very much enjoyed, and a crumb of chocolate which she did not enjoy, forcing the rest of us to save her from having to eat any more of her egg.

Little Fish and Little Friend snuggled down together in the cot most of the afternoon, watching Peppa Pig and Fifi. Mog disdained their choice of viewing and sat in the playroom watching The Little Mermaid and Songs of Praise. And friend and I pottered on through the house, somewhat destroying the playroom and sitting room, but creating order in the kitchen and discovering acres of flooring I hadn't seen for months. Our six year old visitor from Friday, who looked around from the security of her father's lap (wise child), before asking me why on earth things were so messy, would be impressed I think.

Two nights in a row where Mog has given me five hours straight without alarming. Two nights in a row where I've been sleeping in her room, ready to leap at the slighted sound of a struggle. Better nights for both of us, although longer time I'd quite like my bed back please. Perhaps I should move hers into my room instead?

Happy Easter. A Risen Lord and an Empty Tomb far more cause for celebration than a polished floor and a tidy room. But perhaps New Life and a new start aren't all that far apart?


Saturday, 3 April 2010


We have visitors. This is nice; the return of an ex-fosling together with new(ish) Mummy. Company for the girls - someone else for Mog to try to kick, adult conversation for myself, an excuse for the house to be extra chaotic and additional motivation to actually contain the chaos. Nice.

Nothing major planned over the next few days, but a few nice child-friendly trips lined up. And then, as visitors were being ferried over here, I realised our car's MOT expired last month. Bank Holiday Friday before a Bank Holiday weekend not the best time to discover this. And with buses only taking one wheelchair, we're either walking or staying put.

Today we walked all the way to the bottom of the road, stuffed ourselves nicely with a giant meal, waddled all the way home again and settled down to watch Peppa Pig all afternoon satisfied we'd actually achieved something. Tomorrow I expect we will walk the vast distance (measured in yards) between here and church and back, and do more of the same. Nice.

The van's booked in for an emergency MOT on Tuesday morning. It needs to pass; we're supposed to be taking our visitors home again on Wednesday!


Friday, 2 April 2010

Invade the Airways

Blatantly lifted from Tina, but they say imitation is the sincerest form of flattery, don't they?

So, Tina sent me this and I'm passing it on. Let's give Delerious? the chance to be number one for Easter. Take a look at Invade the Airways and see what they have to say.


Thursday, 1 April 2010


Don't tell anyone... but Mog actually slept for six whole hours last night without alarming. At least I assume she did; new monitor does very smart and clever things meaning it only alarms when there's really a problem instead of every time there's nearly a problem, but it doesn't appear to have the facility just to scroll back through the night's readings unless you can download the data. Which I can't. Still, she's still here, and I feel loads better for a decent five hours, even if I did then have to keep jumping back up again to check the monitor really was working.

Unfortunately, Mog managed this better night by lying on her side all squished up, and celebrated by being very uncomfortable with masses of spasm this morning. So I think I need to go ahead and roll her anyway tonight whether she's alarming or not. Still, it was a good run.

And because I had a decent night's sleep, and because therefore sleep is ot the only thing on my mind, I thought I had better make some Hot Cross Buns for tomorrow. Sadly, I appear to have made agnostic Hot Cross Buns - all the ingredients are there but nothing's risen. First batch unleavened. Second batch over baked. Batches three and four are proving now, an if they don't work either I'll be etching crosses onto slices of toast and those eating it will just have to like it.



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