Coordination

From topto toe!

Tia

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...

Tia

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!"

Puncho?

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

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

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...

Tia

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.

Tia

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

Centenary

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.

Tia