Day of rest?

My alarm woke me this morning which makes a nice change from child and cat combo. I say nice change; my mobile phone doubles as my alarm clock. New phone: new alarm. I set it last night, selected a tone for it and chose the "alarm" tone as didn't think I could face waking up to a Mariachi band or any of the other options available.

With hindsight, I should probably have tested this.

As it was, I was sleeping soundly when suddenly aWOOGA aWOOGa aWOOGa aWOOGa a nuclear submarine siren had me off the bed and practically out of the house with two girls in tow before I realised what it was. Not the gentlest way to wake up. Note to self: research gentle "pip pip" alarm tones before bed tonight.

Anyway, up, and awake - very awake - I leapt into action and started sorting the house ready for visitors. Our carer arrives to find me up to my elbows in vegetables and cheese sauce, with both girls awake and still somewhat shellshocked from our wake-up call. Two girls (and myself) dressed, hair and teeth brushed, joint in the oven and we head off to church.

Back from church to find our guests already home, and wonderfully, they have washed up and cleared a pathway through the clutter to all the chairs. It is good to have friends with similar lifestyles! The girls and Comeback were definitely pleased to see our friends:
I'm not sure what the girls were doing here, but they managed to snap out of it quickly enough!
Rosie wasn't quite so sure
But decided he might be just about ok
And actually reasonably interesting
Until he tried to climb further onto her leg; I missed the flying cat pic but it's probably for the best.

I'm reliably informed, by those most in a position to know, that Rosie likes pushing prams and buggies but never with dolls in them.
She does like to keep people guessing!

Meanwhile as this handsome young man relaxed in the sitting room
And these telly addicts chilled (quite literally; I forgot to switch the radiator on) in the playroom
This young man, without being asked, very kindly cleared up in the kitchen for me.And then relaxed with spot a music before, all too soon, it was time for the family to load up and leave us.
Thanks for coming, guys, we loved having you! Shame it's such a distance.

One slightly wobbly Little Fish after they had left, but quickly diverted with a reminder about our next activity. Into our own bus, pick up Grannie and Grandad and off to the pool for a special ROSY swim. Not many families taking it up this time, so we had the pool entirely to ourselves for an hour; lovely.

Back to Grannie and Grandad's house for a cup of tea then back home in time for a foody tea "Mumma I want meat tonight please. Not cold meat, hot meat, you microwave it please", showers and bed for small people.

And now bed for bigger people too I think.
Goodnight,
Tia

You might have a medically complex sibling if

You take the fabric seat off your doll's buggy and use it as a play hoist-sling.
You change your doll's nappy and give it a bottle and then give it suction too.
Your doll gets to play a bit and then do physio "big stretches".

You know the format for a proper medical handover and tell the doctors what is wrong before your parent gets a look-in.
You can count the different medicines and turn the feed pump on and off more easily than the babysitters.

You know when your sister needs help and when she's just teasing you.
You understand your sister can't move towards you and so you deliberately position yourself within reach so she can kick you - and then you come to Mumma telling tales!

You accept the fact that your sister needs a lot of help, and in fact you see your sister needing so much extra help that you refuse to accept that you might also have disabilities of your own which might limit you somewhat.
Tia

Just another day

A nice day, a lunch with friends day, a laugh yourself silly (and be thankful you are single and don't have to care for husbands incapacitated by bad backs) day, a coffee and cakes and carers' humour day. A blog post mentally written by friends at the time, but I'm afraid I got distracted with my shiny new iPhone which was waiting for me when I got home, so you've got these photos instead.

We all have responsibilities in this house. Little Fish believes she is responsible for everything (others disagree). Mog's biggest task right at the moment is to keep breathing and not fitting, but she's also responsible for kicking visitors, choosing our background music, ensuring I don't get any sleep oversleep, looking pretty, and generally keeping life interesting. I appear to be responsible for everything in this house not presently carried out by either girl.

That's the human part of the household. The fish are responsible for having babies, and are a useful bribe reward for visiting children - coats and shoes seem to find their way onto bodies and feet much more willingly when the fish need feeding before departure.

Which leaves the feline population. Goway may be seen here in his role as guard cat.
Seen here on patrol, it is his job to ensure that Mog's blanket does not get kicked off her feetAnd that her feet don't fall off the footplates. It is a job he takes very seriously.He also keeps a careful eye on any potential hazards, for example sweet wrappers, puzzle pieces, suction catheters and woodlice.

When not needed to guard Mog's feet, he moonlights as a supply clerk, doing his best to reduce wasteHere he may be seen rationing suction catheters, double checking feed supplies and insisting that the batteries are fully empty before releasing the charger and cable.

Meanwhile, elsewhere, Suction Cath is ready and waiting.

Tia

Courtney, Courtney!

We had a visitor today.
I think it's safe to say both girls were pretty pleased to see their COURTNEY COURTNEY!In fact, I think everyone wanted to see herAnd talk to her, and do puzzles with her,
and show off our new skills with a paintbrushand get all beautifully excited about her, and be more animated and communicative than we've seen for weeks.

And then of course to get wildly overexcited when it's time to get ready for bed.And have to put your tights over your headbecause it is the funniest thing everuntil, suddenly,it is time for sleep.Goodnight, Little Fish! And bye bye Courtney, see you in the summer.

Tia

You might have a medically complex child if

You phone the doctor's surgery to order some repeat prescriptions, and the receptionist not only recognises your voice and pulls up your child's details on the computer before you even ask, she also reminds you about the drug you usually have to phone back for five minutes after you place the initial order.

The same receptionist decides to bypass the system and send your request to the doctor she knows will approve it rather than the duty one who will be confused and baffled by certain parts of it.

Yet again with one hospital outpatient appointment you can tick off several different specialists who catch you as you sit in the waiting room.

You come away from the appointment in the knowledge that your child has been referred to yet another specialist, in a whole new specialism. And you are reasonably pleased about it.

When you get home, you find messages on the phone from another two specialist nurses.

On phoning yet another specialist nurse, and discovering she is off sick, you realise you have the choice of tracking down a different nurse again, borrowing from another parent, or making do for a week. And decide you can work out how to reuse yet more of your disposable items.

You are able to hold a conversation about the consistency and odour of Bisacodyl induced poo as opposed to Movicol stimulated poo. Not only this, but you are for a few seconds deluded into believing this topic is as fascinating to the world at large as it is to your friends with similar life experiences.

You can give a child a drug, knowing that the drug will almost certainly cause significant problems which will land the child in hospital, and yet decide together with the relevant medical professionals that this is the correct course of action.

You can hook a child up to a pulse ox, and make an accurate prediction before the machine has taken a reading.

You can hear a silent seizure from the next room, even when asleep with a pillow over your head.

You can sit beside your child and readjust her head half an inch at a time until you find a position which looks ridiculously uncomfortable, but in which she is no longer obstructing with every breath. And then you can go to sleep hoping she doesn't move her head when yours is under the pillow.

Your bathroom windowsill has not only showergel, toothpaste, toothbrush and shampoo, but also alcohol gel, dressings, surgical tape, sterile saline and latex-free gloves.

Your drugs cupboard is bigger than your drinks cabinet, and the delivery driver from the chemist is so used to your house she now doesn't bother knocking and just walks right in to leave the bags on the hall table.

There are twelve boxes of disposable plastics in your garage, and all of them will be used this month.

You have at least three items of medical equipment plugged in and charging overnight, but you consistently forget to charge the telephone.

You can bribe your small child to do anything with the promise of a teaspoonful of lactulose.

You can fix a broken wheelchair or at least bodge it together until the repairmen come, fashion a joystick controller out of blue tac, parcel tape and a pen lid, keep a running total of various drug totals in your head to avoid overdosing a child in a 24 hour period, simulatenously operate a suction machine, make a phone call, turn off a feed pump and separate a small child from a pair of scissors, but discovering one odd sock which missed the wash can make you cry.

Got any more?
Tia

Shame

Shame is:

A beautifully peaceful morning. All children in school, albeit only for a couple of hours, all kinds of things which ought to have been done, but horizontal on the settee won. Very nice.

And then Little Fish came back from school, and pottered around for a few minutes before coming back to look at me very seriously. "Mummy, maybe you and me tidy the kitchen together. It is messy. You an me clean it together." My three year old child thinks that I need help in the cleaning department, and not only that, thinks things are bad enough that sorting them out should take priority over eating cheese or watching the Teletubbies.

I suppose it is just possible that she may have had a point...

So, we tidied. Well, I tidied, and washed up, and dried up, and put things away. Little Fish sat sipping tiny sips of juice from one of her doll's cups and passing comment "You hands dirty Mummy" "Those bubbles hot Mummy" "This one broken Mummy", and then started passing me items from various cupboards to wash, clearly thinking that the general washing up was not sufficient. And then she got cross that I refused to wash the trays up, and went off to sort things out in her own play kitchen.

I finished the washing up, abandoned the rest of the kitchen, made lunch for us both and came back to the sitting room. Now we had visitors last night, planned visitors, so the sitting room had been tidy. Apparently it's only mess in the kitchen Little Fish worries about though, as she was kind enough to pass this on to me to deal with.
I do wonder why I bother.
Tia

PS ADMIN: People have been having difficulty commenting; it should be easier now. If there are still problems please let me know.

My little helper.

Last day of the school holidays here today unless it snows again tonight, and it's not allowed to do that so I'm not even going to think about it . Our plan was to get out and do something fun and back to schooly, but for some reason we didn't quite make it out of the front door.

You know the house isn't in a great state when the cleaner swears when she opens the front door. So, stapling Little Fish to the floor distracting Little Fish with the lure of the Teletubbies, we had a house blitz.

Christmas decorations down, tree in the garden, pine needles clogging the hoover. Two loads of washing processed. Bathroom polished, kitchen tidied, previously undiscovered work surfaces now finally visible.

And then the cleaner went home, and I released Little Fish from her temporary prison cell turned the television off.

And then the doorbell rang, and the man from Abbott Hospital to Home turned up with what was supposed to be a month's worth of feed supplies. For some reason our usual order - four boxes - had multiplied; instead of adding one small fifth box to accommodate the new design of feed bag we now had twelve. Great. I stacked them in the garage, Mog listened to her music, and Little Fish decided the cats were hungry.I found the dustpan and brush, the box for the feed, fresh water, more wet food, and Little Fish decided her baby was hungry and thirsty. So she fed him some cheese and lactulose.And then decided she was hungry herself, and would quite like some bread and milk. So I made her her lunch, and she then decided it needed to be cooked properly.And you thought I was joking about the need to staple her to the floor.

Abandoning all hopes of allowing her out of my sight doing anything productive, I decided we'd do some baking. We made a nice batch of chocolate brownies, and I gave Little Fish the bowl to scrape out.
I thinkshe mighthave enjoyedherself!
And after that a nice long soak in a bath meant that she was finally safely contained in one space for a while, ready for a nice early night, and clean enough to pass muster at school tomorrow.

It's school tomorrow. I can't wait!
Tia