Tuesday 26 July 2011

About Turn

This time three nights ago, I was sitting beside a hospital bed signing the consent forms to allow doctors to insert a line into my daughter's head to measure intracranial pressure. Tonight, I am sitting in our new tent mansion listening to the distant voices of Guides singing a rattling round of Tzena Tzena, watching my two girls sleeping peacefully in a nest of blankets and lilos, and my biggest current problem is where I left my thick blue fleece and whether my thinner blue sweatshirt will be warm enough tonight.

Life is, at times, extraordinarily good.


Saturday 23 July 2011

Essential bathroom accessories

Title relates to photo and not rear of the post.

In other news, we are home. Out on parole; have to report in on Monday morning and let the powers that be make more decisions. Hopefully the latest batch of urine and swabs will show something we can fix quite easily without needing to be readmitted.

Meanwhile, the Little Princess continues to run a temperature. She's operating at around 90%, getting tired but full of enthusiasm and very pleased to be home. She's also absolutely adamant that all three of us must stay together, struggling lots with the idea that any one of us might do something apart from the other two.

We should be at Guide camp right now. Clearly, that's not on the cards right now. But we are running down to visit them for a few hours tomorrow. This is, it turns out, a good thing, since we are now taking with us two tents, one lilo, one bunch of song books, and three smelly cheeses. All of which were somehow left behind this morning. Guide parents panic not; the tents aren't the ones the girls should be sleeping in, and the lilo belongs to a leader.

And for now I'm enjoying another quiet (I hope) night in my own snuggly memory foam bed; clean sheets, and the only noises those attached to my own girls, not the vomits and screeches and monitor shrieks attached to the best of children's wards. No bickering parents under the impression curtains are soundproof, no small children in distress, no nurses trying to gather obs. And, no gentle breeze flapping through our new tent, no scents wafting through the canvas, no starlight and moonshine turning rough turf into mountains and valleys. My lovely bed compensates for some of that though.


Friday 22 July 2011

Back in the jug agane

So it turns out that the Little Princess' headaches are definitely not supposed to be happening. Another bad bout won us the dubious privilege of an admission to try to sort them out.

A second inconclusive CT scan now followed by a late night insertion of an intracranial pressure monitor. One decentish night's sleep with what looked to the laywoman to be fairly normal pressures.

One 39.5 temp at 6 am so a bit of a rude awakening. Everything else looking ok, so the dreaded bloods need to be taken at some point.

ICP monitor will stay on until she's had a headache. Probably an infection somewhere but intermittent nature of the problem doesn't shriek shunt infection, everything else seems fine so we may be here for a while trying to figure things out.

Meanwhile on the home front, Mog and our sitter were editors by a police raid on our neighbours in the wee small hours. She can't sit tonight; I wonder why?


Sunday 17 July 2011

Booksneeze Review - The Waiting Place, by Eileen Burton

Learning to appreciate life's little delays is the subtitle of this book, and the reason why I chose it. I am waiting, waiting for life to slow down, waiting for my girls' health to stabilise, waiting for there to be 30 hours in every day, so that I can take some time for myself as well as scrambling around caring, cleaning, nursing, chauffering, PA-ing, entertaining. Waiting to have time to make plans.

All of which sounds fine, except that I am waiting for all this to stop, getting caught up in the "What I could do if only...?" rather than concentrating on the "What can I do right now?" Dreaming is good; if Martin Luther hadn't had a dream, how would life look now? But where dreaming interferes with living, it's less helpful.

It took me a few chapters to get into this book. Taking trips down someone else's Memory Lane wasn't what I was expecting from an author who claims "The Waiting Place is for people like me who get stuck in their precious, mundane, gorgeous, absurd lives. It is for those who work hard at the 'business of living' only to find that they seem to be caught in one long, boring meeting." But I persevered, taking my own side trip back into my own childhood home (much easier, since it's just around the corner, and my parents still live there), and found some treasures I know I will want to reread.

I can utterly identify with Eileen as she remembers waiting for her son to take another breath. The relief of knowing that there is actually something wrong, that what you are living is not, in fact, normal, and that the doctors are concerned too.

And then this "There are times when we are left only with what feels like the wrong ending. When we listen closely enough, we think we hear the angels cry." Beautiful.

This is a book to dip into rather than necessarily to read as a whole. With essays on childhood, family life, difficult times, and stepping out of the safety zone (and giving your car to a stranger because God told you to), I know that I will be revisiting different chapters at different times.

I'm not a Pastor's wife (or anybody's wife), I've not ever had to queue to qualify for WIC support (not something we have over here), my mother has never tried to buy me a wig. But whilst these experiences are what Eileen uses to demonstrate her points, I'm a woman in a busy and less than perfect world, and I can certainly identify her Waiting Places in my own life.

I received a copy of this book free from BookSneeze in exchange for writing a review. I was not obliged to write a good review.

I review for BookSneeze®

Friday 15 July 2011


We had a carer this morning. She got Mog up for me, managed to brush the Little Princess' hair, and even found time to play a game of snap whilst I searched for the remnants of my sanity, still somewhat shredded from yesterday's activities.

And then she left, and five minutes later the phone rang. "Have you got both your cats with you? Because there's a very flat cat down here, I think it might be one of yours."

And so I spent this morning shovelling Gotcha off the pavement. Far too big a beastie for the bag I had brought with me, I posted his face into it and carried one very stiff, ridiculously heavy, ex-feline friend 300 yards to the vet. Apologies to anyone who may have been walking children to school at the same time, but I couldn't leave him there. He slipped his collar last week; would someone have called me if he'd been wearing it? I don't think it would have made any difference to the outcome, but who knows?

I can't say Goodbye, Old Friend; he was only two. I can say I bottled out of trying to explain cremation to a six year old, only to spend the afternoon trying to explain that no, he won't mind being buried because there's nothing left to mind.

And then this afternoon, his new collar arrived in the post.

I think it's safe to say today has not been a great day either.

Thursday 14 July 2011


It all seemed like a good plan at the time. The bus needed a new back door, thanks to losing an altercation with a gate post. The diary was actually empty for two days, so sending it to the garage wouldn't be too much of an inconvenience.

It started well. Despite having no carer, the girls and I were up and dressed in time for Mog's school bus. The Little Princess and I loaded ourselves into our bus, after a brief pause to empty it of tent, camping equipment, oxygen, McDonald's Happy Meal boxes, etc. We drove to the garage, waving to Mog as her school is opposite the garage, and dropped the bus off. One very happy Little Princess and I walked into town to see if her new chair would fit onto the local buses, riding two stops before reversing off the bus to a chorus of cheers from thankfully good-natured passengers and driver. Hurrah.

We walk the rest of the way home, have a brief pause before setting off to walk to school. I hand tLP over to her TA, And my phone rings. It is Mog's school; Mog isn't well, will I go and take a look please? I walk back past our house and over to Mog's school, where one very happy grinny Mog is waiting to be taken home. We stay for a quick harness change at the wheelchair clinic, then grab her gear and I walk her home.

As I leave Mog's school, the phone rings. tLP is not well, will I come and take a look?

One brisk walk later, we are home, and thankfully tLP's TA agrees to walk her home to meet us.

And now I have at home one ridiculously well Mog, but a Mog whose suction pump is now plugged into the charger I had forgotten to send to school. Bad mother alert. And I have one Little Princess who is sweating buckets, in a lot of pain, and who just wants to lie on my lap and not move at all.

Lots of pain relief, we spend a couple of hours sorting out possible constipation issues, and as I try to work out the logistics of how to get both girls to hospital without our bus (which boils down to whose wheelchair should we leave behind and can I cram them both into a buggy somehow?), she settles a little and I decide it can wait for a while.

One horrible night, which she doesn't appear to remember, and one girl waking this morning alert and bright eyed, not needing any of the pain meds she has been living on for the past few days, and drawing a beautiful picture. And finding some scissors and cutting chunks out of her hair, but I'm trying to forget that bit.

But what has been happening just at night has now happened during the day (i.e. too much pain to cope with), so time to phone the hospital. Who, as expected, say to bring her in for a review. A quick warning call to Mog's school with an advance apology that any emergencies will mean calling an ambulance as I can't get there. A quick run down the list of people who might be able to meet Mog after school if necessary (note to self: list entirely too short, must cultivate non-working friends). And a long bus trip with a very happy Little Princess.

One happy and pain free LP up on the ward, examined and appears fine, but let's do a quick CT scan just in case. One fine CT scan and we are back to no problem showing. Which is not unexpected, since she is currently demonstrating handbrake turns in the corridor and building lego cities in the playroom. One prescription for slightly stronger pain relief, but only to be given as a one off, as it will mask potential problems. And then run for the bus, cancel the care and race Mog home.

So, we are home. Which is good news. Except that it's not, not really. Our current theory is that this is not to do with the operation, but is instead a sign that her VP Shunt is now working intermittently. It's still working too well to need changing, which is good. And it might sort itself out, which would be great. But it might very well not. And so we watch and wait and see. And have to bring her in next time the pain gets unbearable. Which sounds sensible, except that this seems to happen at 2AM. And whilst the garage have just returned the bus, I still don't relish the idea of getting both girls up in the middle of the night and transporting they and all their equipment, possibly repeatedly, until she has an episode which lasts long enough to be checked properly.

Oh, and did I mention that we got off the bus and she started crying, and has been complaining ever since that her head is sore. Until I say we'll have to go back to hospital, at which point she insists it is all better. And now I genuinely have no idea whether it is really sore, but she is able to hide it completely from the doctors, or whether it is all a big ploy for sympathy and to keep me by her side, and isn't anything like as bad as she is making out. Both are possibilities. I am tired.


Friday 8 July 2011

Three dimensional living.

Such a simple thing, something we all take for granted. We stretch up to reach that tall cupboard, or grab the apple straight from the tree. We reach down low to grub in the dirt, pick things up from the floor, do our shoelaces up. And then we stand/slouch/sit/take up any one of a hundred positions inbetween.

We move forwards and backwards, side to side. And up and down.

Up until now, the Little Princess has lived life in two dimensions. She's beetled about backwards and forwards, side to side, but lived most of her life at a level more or less limited to somewhere between 30 and 60 cms off the ground - her seated height plus her ability to bend.

It's a decent, functional height, on the whole, for a child her age. Sitting, her head is on a level with her peers when they stand. And her knees are mostly able to fit under tables in restaurants and cafes, albeit at a slight angle to accommodate her joystick.
Plenty you can do at that height - her she is, helping the gardener using a long-handled something, to trim the edges of the lawn.


Now she has other options. Raising her chair up high, she can reach the sink to wash up, and the cooker to melt butter. She can sit in the middle of the room and watch the windows for visitors and give an embarrassingly loud commentary on all the neighbours' activities. She delights in coming up high so we can cuddle without me crouching down.

And then there's this. No longer limited to just what she can do with the long-handled tools. She watches, imitates, and is free to get down and join in, no need to be lifted out of her chair, no need to wait for someone to lift her back in. Just the freedom to squat down, dig a hole, find a worm and a woodlouse and five stripey snails, and help plant our new borders.
Life in three dimensions. Just living.

Thursday 7 July 2011

You know you're tired when

You stand at the door, pressing the "unlock" button on the key fob, hearing the click clack of the lock, and can't figure out why you can't open the door. Until you realise the front door of your house does not in fact have remote central locking and put the car key down.

You get inside, and realise that even if it did have central locking (and what an outstanding idea that would be), it would not have locked the house, as you left the back door wide open.

And then you realise you are wearing your slippers.


Saturday 2 July 2011

Giggle Juice

Miss Mog has managed 2.5 days in school so far this last term. She does have the unusual distinction of having beaten her sister's attendance rate, but then she does not have her sister's neurosurgery excuse.

But, starting a couple of days ago, Mistress Mog decided to make it clear that she might just be feeling better.

Wearing your new Birthday outfit always helps.
But most of the last three days have been more like this.

And I don't know what's been added to her milk, but I want some!

(I'd also like some antidote, since she's been laughing most of the night too)
Little Sister insisted on getting in on the action.



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