The bells, the bells

You know you're tired when you drive past one of these sets of zig zagsand you find yourself thinking "Oh, that's a good trace"
and then you realise the noise isn't an alarm; it's your engine, and you remember you are driving.

So then, you get a new monitor, a new flashy fancy monitor with a clever little setting which means it doesn't alarm every time SATs drop, only when they either drop dramatically, or they dip but stay dipped. It's very very cool. And it didn't alarm for four whole hours last night. Which meant I had to get up at 1AM just to check it hadn't been switched off.

Unfortunately it then went off at approximately hourly intervals throughout the rest of the night, until it got so that every time I lay down again, I could hear the beep BEEP BEEEEEEEEEP beep beep even when it wasn't actually doing anything at all. And then after about 5 it was going so constantly I gave up on trying to sleep and went and had a nice little chat with Trina. So thankful for different time zones. And intrigued by descriptions of her own home made jaw support she fashioned a few years ago out of a bicycle helmet and some tape when her son was having similar problems.

Somewhat annoyingly, it didn't alarm at all after that and Mog had a beautiful couple of hours of peaceful sleep.

And then in the morning, I made the discovery that walking isn't terribly safe either - these pedestrian crossing lights
start to look disconcertingly like our new monitor
and I found myself reaching out to grab Little Fish's jaw, much to her confusion.

We're getting a night carer. Can't come soon enough!
Tia

Farmer Gow's

Mog's class had a field trip today. To actual fields; Farmer Gow's fields in fact. Just the right size for the class; hay bales to climb on for those in the mood, toy tractors for those who weren't, a big covered barn full of toys and books, and a nice cafe (selling Goat Burgers) for those of us with more fragile children who couldn't possibly have coped splashing around in the muddy puddles all day.

Oh, and animals of course.

Two week old chicks.Mog wasn't sure at first.


But then
she thought they might be alright after all!

Hungry baby goats
And a very cuddly lamb
Some ridiculously loud sheep and pigs and some very smelly ferrets. Eggs to gather for the busier children, and more coffee and cakes in the cafe for we quieter ones.

A good trip. Would have been perfect if only I'd remembered to switch Mog's feed back on again once she was back in her wheelchair instead of leaving it until 6PM. But that's ok, because I didn't really need sleep anyway.
Tia

Five

Happy Birthday. Little Fish!

The rest of us are celebrating even if the felines are resisting.

Big thanks to Grandad for helping to assemble the most complicated flatpack in the world. And to any locals reading, feel free to spot your own Birthday gift in and around the new Kitchen!
Tia

To Dream, perchance, of sleep

Sadly Friday night was not repeated. I thought I'd had three hours straight Saturday night but but it was 2 hours plus an automatic loss of hour due to British Summer Time. Side note: how can it now be BST when they're still predicting snow later this week? Ridiculous.

And last night? Last night Dad and I spent four hours assembling the flattest of flat packs (you know it's not going to be a simple job when there are 20 different kinds of screws, and the flat bits are labelled not just A-Z but then move to AA, AB, AC, etc right the way through to AM), creating something rather fabulous for Little Fish, but not finishing until nearly midnight. Photos to follow when she's had time to see it for herself.

Meanwhile Mog decided to keep life interesting, alarming and needing repositioning at 9.30, 11.30, 1.20, 2.30, 3.20, 4.00, 4.20, 4.30-5.12 (oops slept through that one), 6.10, and 6.50. And Little Fish decided to reflux somewhere around 4AM, obviously keen to ensure she wasn't ignored overnight. One sheet with nice neat coffee grounds on it, one stomach full of air; deflated, she then slept through til 8. Now why couldn't she have done the sleeping late bit over the weekend?

Photos for Tina - sorry I didn't get them to you before bedtime but there were one or two things grabbing my attention!and with the chin strapFull Face mask photos not here yet as still waiting for replacement full face mask - come on, Mr Postman.

It's not as if I'm not used to being awake at nights. Goldie used to have a monthly sleep cycle - awake all day and night at the top of the cycle, and asleep for a week at the bottom. Somewhere in the middle a happy medium. But even on her most awakiest of nights she didn't actually need me. She'd lie in bed, fizzing over with the joy of being alive, waving her hands in front of her face and ScrEeEEEEeeeeEEEEEeeeeeeEEEEEEEEEching, and rocking the bed so that we had to move it into the middle of the room. And, barring the odd occasion when she'd call for me*, most of the time she'd just entertain herself. So I'd shut every door between her and me, stick a pillow over my head, and be thankful that she was happy. And try hard not to care about how noisy happy was. This is less fun.

And now excuse me, bed is calling.
Tia

*My favourite night time memory; being summonsed in our old house, which meant staggering down a flight of wooden steps from my room to hers, not pleasant in the depths of winter and never fun at 4AM. I walked into her room and asked her what she wanted. It's possible I was not terribly polite. And she grabbed my hands from her bed, and lifted her head up to call "you put your left hand in, your left hand out, OOOOooohhhhh the Hokey Cokey!" Hard to be cross about that really.

That mattress

It really did come as quickly as promised. The postman brought this little parcel to the door,
and we opened it, revealing this little blue tubeOpening the tube, we found a very thin, tightly rolled, blue plastic sheet.
Here's the clever bit, the tube becomes the pump to inflate it (note to self: don't lose the tube)
And two minutes later we had this.

I think it's safe to say she likes it
and it has definitely meant no more tears when sleeping on her side. In fact, last night I was brave, rolled her onto her side at midnight, and we both slept through til 4. Bliss. I feel human again. New mattress? That or the combined prayers of just about everyone we know. Yesterday morning, as I was scaling Mount Everest trudging back from school concentrating on remembering to lift one foot up and put it down again before picking the next one up, I was overtaken by our Vicar, who commented that I looked tired. Do a Vicar's prayers count for more than the common people's perhaps?

Whatever the cause, I'll take it. Four hours straight plus catnaps either side; I feel human again. Thanks be to God.
Tia

Dear Me,

Wake up, sit up, don glasses, place feet on the floor, stand up, then walk out of the bedroom. Incorrect order will result in tangled bedsheets and misplaced glasses, and will not achieve leaving the room.

When dressing, it is wise to put underwear on before the outerwear. You are not Superman.

The monitor won't stop beeping if you only dream you've repositioned Mog.

If you can't remember the name of your friend's son, you probably shouldn't get in a car and drive to meet them. You do not get bonus points for working out the boy cannot be called Josephine.

Tia

Disney Delights

Helen House Hospice is something really special. 90% of the annual £4.5 million running costs come through voluntary donations. From large scale corporate sponsorship down to the 50p profit on a second hand t-shirt bought at one of the Hospice Shops, it all goes towards fairly important stuff, like the chance for me to get a decent night's sleep seven nights a year. I'm a fan.

It's not all money though. There are the crafters who donate quilts to be given to the children, a stitched up cuddle to comfort in difficult times. These ones came through our community nurses, but Project Linus and other groups give to the hospice too. And then there are the companies who donate goods. The girls hit it lucky this time; a Disney delivery mid-way through their stay. Boxes and boxes, dressing up clothes, craft stuff, DVDs, toys and games and generally all things Disney. As the care staff took the cardboard Tinkerbells and Frogs to refresh the walls in the sitting room, the girls were allowed to make their own selection from the boxes of delight.

Mog took her own time to decide between a new DVD and a snuggly blanket. She did eventually choose the blanket, which has been worn so constantly it's now waiting by the washing machine, muddy tramlines running across it from where she successfully kicked it off mid-walk yesterday.

And Little Fish? Little Fish's life was completed with the discovery of High School Musical things.
A note book, a drinks cup with a super whirly whizzy straw, just long enough to make it impossible for her to slurp more than the tiniest sip at a time (which is all she's supposed to have); commercial value probably not very much. But value to Little Fish,
fairly extreme!

It's a great place, Helen House. But it's also a bit of a scary idea for Little Fish. This is somewhere where Mummy isn't necessarily on hand every two hours to meet all her personal care needs. It's somewhere where new people come and entertain her, and where she has to trust new people again to adjust her mask and do her tube feeds.

But now, it's also a place where people give her the world's best presents. It's a place where a team of staff are on hand to keep her entertained, where there's a messy room just waiting for her to cover it and herself with paint. And if that sounds like bribery, well, perhaps it is. But it's a place where she is beginning to feel safe, somewhere she is beginning to recognise as special for her as well as just special for Mummy. And if it takes bribery by Disney to get that, I'll take it!

Tia