Thursday 26 April 2012

High tech friends, checking each other's monsters whilst the grown-ups play chat and drink tea.

One of these children is two years older than the other. One of them is stuck on the floor once down there, the other chooses to stay close. One grows tall and strong; the other is twisting and turning more each day. Both of them have a vocabulary made up of lovely words like "Writed" and "Fallded", and neither of their mothers can immediately tell which is talking. Different schools, different towns, different churches, different life experiences. But whether they are using the Force (of the power chair to practice flying), or sharing disgustingly chewy sweets, or just finding new ways to fool monsters into eating broccoli. they manage to skip through all the differences and just enjoy each others' company.

To quote the young man, in an earlier conversation with his mother "Every one should have a friend who is disabled, and if they don't, it is a shame."

Tuesday 24 April 2012

Shrinking, changing, and generally improving.

 No this isn't about losing weight! Things here be changing. A new oxygen supplier, means that concentrator A (left) has been replaced with concentrator B (right), and if my photography skills were rather less rubbish, you'd immediately see that it is both half the size and capable of delivering nearly twice the litres per minute. It's also a fraction of the noise level. Hurrah! Although we won't get too excited about that bit, since it will shortly be replaced by a concentrator which is a third the size again, back to the original maximum delivery, and slightly noisier. But working on batteries and car batteries and with a very cool wheely handle thingy, so no more working out how many hours we have left in the tank before we need to go home. Excellent! (Linky here as don't actually have it yet to photograph.
  Our cylinders are not shrinking, not in quantity nor in size. But they are definitely changing. If you were a little girl with a rather beautiful mural on your bedroom wall, would you prefer the cool and dudy green and white, or boring brown and grey? Plus, the bigger green one has a handle which is actually comfortable to hold and easy to lift. We likey.

And meanwhile, another solution. What do you do when you have an identical button placed in your caecostomy and your gastrostomy, when you use identical extension tubes for feeding and pooing, and when you use identical syringes for bladder and bowel washouts?

Yes, we keep them in separate places and different boxes, but it's still too easy to confuse the issue. I'm thinking these new stickers ought to at least make it harder to get it wrong. Now, how unethical would it be to tattoo the small child in matching colours to really reinforce the point?


Wednesday 18 April 2012


We've booked a holiday. Not for six months or so, but come October half term, we'll be jetting off to Florida. It will, I think, be our last holiday there. Two girls getting bigger means two girls ever less comfortable with the flying, and ever harder to move around once we get there. Surgeries threatening, more physical complications looming, mean with or without surgery, more pain, more awkwardness, less ability to sit on a standard chair for the length of the flight. And ever more bits of equipment mean ever more hassle to pack, to get things in under the weight limits, and to organise the less portable bits of kit once we get to the other end.

So far, we've booked our flights and our hotel. We have conceded the need to pay extra for direct flights; this adds around £500 to each of our costs. The hotel is probably one we'd choose anyway; except that if I had two girls who could sleep through the night without waking and without needing noisy breathing equipment, we might have gone for just a room rather than a suite. Then again, it's nice not to have to sit quietly in a dark room once they're asleep, so perhaps I shouldn't charge that cost to them.

Big cheers to Virgin Atlantic; no charge for oxygen on board, a choice of two different travel chairs (that'll be the Burnett for Mog and the travel chair for tLP then please) again at no cost, bulkhead seating provided the seatbelts will accommodate the chairs, extra baggage allowance and extra carry on for all the equipment, and no problem if we choose to take tLP's tank rather than her manual chair. A dedicated number to call for any queries at all, detailed info about what we need to do for security on both sides, assistance booked and a huge feeling of "no problem" rather than "it's a nuisance but we'll do it I suppose." Only slight issue is that the airline will only give us an extra suitcase allowance on the way out, on the theory incontinence and feed supplies will be used up by the time we come back again. Which is fine, except that in that case, where will we put all our shopping?

For the first time on holiday, I'm considering hiring some equipment out there. We're going to need a commode seat of some kind, and a transformer. Oh, and oxygen. Not because we will need it (she is NOT allowed to be ill out there), but because if we don't have it, I just know that we will definitely need it. If we're hiring those already, do we push the boat out and treat ourselves to a nice hospital bed? It would be lovely to have something high enough not to have to bend down for every change.

Taxis or hire a WAV? Powerchair, and risk damaging it in flight, and risk it damaging other people in a fairly litigious country? Or manual chair and the need for pushers, and nowhere to hang all our equipment on days out? Powerchair and the need for a wheelchair accessible vehicle at all times, or manual chair and get away with taxis with a big boot? To drive or not to drive, that is the question?

And then there's the insurance. Last time we went, we paid £370 for a week; our friends paid £37 for the same week. It seems we've added one or two rather expensive conditions to the girls' various lists of diagnoses since last time we went. At £1200, the insurance is officially costing more than the flight and hotel for one child. As I said; I think this will be our last Big Holiday.

This being our last Big Trip, do we make it extra special? Anyone fancy swimming with dolphins? Or is a Character meal special enough? Asking the Little Princess; she is most excited not about meeting Princesses (done that!) nor about flying (done that too!) but about the fountains (very cute video). I'm impressed she remembers; but a little disappointed - we can do that right here in Abingdon! Perhaps the week in the gentle warm sun (you hear that, Floridians, we are ordering some Warm Weather in October please!) is special enough. I do know that last time we went in October, the last blast of decent sunlight saw us all through to the middle of winter very nicely.

So if this were your Last Big Thing (and don't worry, neither of the girls is in imminent danger of clog-popping; I'm just aware that the practicalities of life will be limiting all of us as we all get bigger), what wouldn't you want to miss? What would you? Or what other Big Things might you do instead once flying is no longer an option?


Tuesday 17 April 2012


This week's fruit and veg box looks particularly appetising, perhaps because I now have the leisure to decide what to cook and when without a small voice informing me of what she does and doesn't want and like and need, and without the constant CBeebies chatter. It's almost enough to make me want a giant bowl of vegetable soup with a banana, mango, and pear smoothie to finish. Almost...

It is, however, really satisfying to be able to cook for all three of us these days. To take some fish from the freezer, add fresh potatoes and leafy greens, scoop some of that into Izzy the Whizzy, and know that all three of us are getting what we need from things I can see and touch and smell, not from a bland, artificially scented, powder.

Oily fish tonight with some nice dark leafy veg. Chicken yesterday, with roasted roots. Leek and potato frittata tomorrow perhaps. Antioxidants, omega oils, minerals, vitamins, natural fibre. Different colours, different smells, different feels in the stomach. One and a half of us will be getting food through a tube rather than chewing and swallowing, but why should that mean different food?

I must go; the veg box came with a recipe for Carrot Muffins and it is calling my name.

Friday 13 April 2012

Every Day a New Adventure

Fun times all round today. A nice, reasonably civilised, meal with friends. We only took up one end of the coffee shop in question, sampled most of the menu, drank most of the coffee, and attracted just one complaint about the loudness of the laughter. No complaints about the conversational subject matter, so we can't have been that awful.

The three smallest children finished feeding first, as children often do when the grownups are too busy talking, and asked to go down to play.The coffee shop being just minutes from their house, and a lovely safe and traffic free network of footpaths and grass dividing the two, we were more than happy to let them roam free. This wasn't quite what we'd expected to see when we glimpsed them from the window, but hey, wheelchairs are cool, right?

Meanwhile, Miss Mog struggled with some tummy troubles, enjoyed a good cuddle, and the grownups had another cup of tea.

Rounding up the littlies, we sent them on their way home, Mog and I arranging to meet up back at their house with the bus. And so I loaded Mog onto the bus, clamped her in, got her settled with music on the phone, tossed the keys onto the front seat ready to go, folded the lift, slammed the back doors shut, and heard a sickening clunkclink, as the bus locked itself shut. Mog inside, phone inside, keys inside, me outside.

Bother, I thought to myself. Oh what a jolly nuisance.*

Grabbing a couple of random shoppers, I accosted them with my news, and they joined me in checking that all the doors really were locked, and all the windows really were completely closed, and all the keys really were in the front seat, with none carefully stowed anywhere more accessible, and no handy husband with a spare set anywhere.

Thankfully, the Little Princess was happily settled with our friends, although I don't think they'll forgive me for not letting them know what was happening next. AA couldn't help (Note to my US friends; that would the the Autmobile Association, i.e. the "fourth emergency service" and not Alcoholics Anonymous), but suggested calling the fire brigade. Mog decided to celebrate being locked in a hot bus by having a nicely visible even to the untrained eye set of seizures. People suggested an ambulance, I declined on the grounds that the emergency meds were in the bus with Mog, and once we could reach her, we'd reach them too and problem solved.

A nice crowd had gathered by this point, including various men-with-vans, all of whom apparently had no problem jigging their own locks with screw drivers and coat hangers. None of whom could repeat the trick on mine. And then finally the sound of sirens, and a rather large fire engine stormed the carpark, ready to do battle.

Various windows tapped and then taped, ready to be shattered if necessary. Two windows attacked more gently with crowbars and screwdrivers, until one fairly quiet fireman offered his services, having allegedly been a bit of an expert in these matters in a previous unofficial career. A little more tapping and taping, and the window was open; only damage being repairable with superglue (note to self: buy some decent superglue).

One fireman posted in through the open window, head and bottom first, leaving one leg to be posted through after him by a crowd of willing workers. Sadly my camera was still an integral part of my phone, which was perched on Mog's shoulder, and she wasn't in the mood for learning new skills. Shame. Fresh cool air and a slug of diazepam stopped the seizures though, just in time to rescue our friends from the Little Princess, and head on home after a very welcome cup of tea.

And now the Little Princess is fast asleep, having worn herself out telling the tale to all our neighbours, random passersby, and Grannie. And Miss Mog is in bed, but not very happy, with a painful something, but not sure what.

And I'm here, thankful for speedy firemen and the kindness of random strangers who stayed to make sure we were ok, and for friends who didn't mind being late to their own appointments (or who, if they did, hid it well), to look after the Little Princess. But now I had better go and see if I can make Mog more comfortable.


*Or words to that effect

Monday 9 April 2012

Don't Wanna

Mog, Great Grannie and I all had a lovely day today at the Living Rainforest.
The Little Princess Didn't Wanna.
Before we went, we had time to play a game. But "I don't wanna" tipped up the pieces and tossed down the spinner.
We had beautiful Sunshine Soup for lunch. But "I don't wanna."
Chocolate eggs. "Don't wanna."

Into the bus ready to go. "I don't wanna be first, Great Grannie should get in first because she is the slowest." Shortly followed by "Hey! I don't wanna wait; I should be the leader."

Once all clamped and seat belted "I don't wanna go, I am too tired."

For the first half of the visit "I don't wanna stay. I wanna go home. I don't wanna see the monkeys. I am too tired."

For the second half of the visit "I don't wanna move. I don't wanna leave the monkeys. Hey wait, I don't wanna do anyfink I just wanna drink."

She didn't wanna cake. She didn't wanna see the shop. She didn't wanna keep moving or stop. She didn't, actually, wanna drink. But she didn't wanna leave without drinking it either.

And then she didn't wanna go home, she didn't wanna get back in the car, she didn't wanna go on all the roads. She didn't wanna know the way and she didn't wanna not know the way. She didn't
wanna eat and then she didn't wanna wait acos she was too hungry. And she didn't wanna go to bed but she didn't wanna sit up because she was too tired.

And now she's in bed, and she wants to roll over and she wants to be burped, and she wants a blanket and she wants her duvet straightened out and she wants her Nippy adjusting, and you know what?


ps - keen eyes will notice Miss Mog thoroughly enjoying herself - she finds the Princess' tantrums highly entertaining. This is not met with royal approval.

Tuesday 3 April 2012

A real Brainwave

Miss Mog please note; too much twitching will land you with a very unstylish hairdo. EEG time again. I don't know much about normal brainwave patterns, but I'm assuming the general overcaffeinated spider tracks across the computer screen are not your average reading. She didn't go to sleep - nine year olds tend not to do that in the middle of the morning (unless you've arranged for them to do something really exciting), but she did have a nice run of mild seizures; hopefully that'll be enough to pick up what needs to be noticed. I hope so, anyway, because really, Mog, this is a much better look on you.
My lovely glowing girl.


Sunday 1 April 2012


"I am not a Princess any more. I am a Queen"
"Do you think I might maybe have some presents when it is actually my Birthday really?"
"How lucky am I, to go to school on my Birthday?"
"What? Really for me? I can really have my own little cars?"
"Will anyone sing to me and call me the Birthday Girl?"
"I need my big sister to come to my party too"
"Ice skating is amazing but it is a ploblem that it is very slippery."

Seven years ago, you were a bit of a surprise to parents who had been looking forwards to meeting you, and to the doctors who had the privilege of catching you. Seven years ago, the predictions for your survival were pretty grim. You had an impressive collection of life threatening and life limiting conditions, you had something some of the doctors had never seen before, you had something incompatible with life, and a good collection of complications just to keep things really really interesting.

And you proved everybody very wrong, and you decided life was going to be exciting and adventurous. And those doctors who made such grim predictions followed your lead and worked hard to give you a good life. And they still follow your lead now, and work towards your independence. You probably don't realise they are being lead by you; I know you would choose not to have surgery. But they are listening to the things you say you want, and the surgeries and other treatments are all important in giving you that freedom.

We didn't meet until after your first Birthday; precious photos show you and your foster-brothers enjoying a caterpillar cake and riding around on your toy truck. Your little cousins enjoy that truck when they visit Grannie and Grandad's house now; it may not have special significance for anyone else, but I love having that link with your past.

And now you are seven. It's all one school now, but you will be moving from what was Infants into Juniors, and I wonder where my baby went? You like cars and jigsaw puzzles, crafts and drawing and Harry and his Bucket Full of Dinosaurs. You enjoy going to the cinema and love to share a Chinese takeaway with me, and don't see why we can't have a Curry the following night too. Your hair is long, and you have your own ideas about styling it. You have your own taste in music and like to make up dances. You direct those bits of your care you can't manage for yourself, and you decide for yourself which bits of care that might be.

You are a daughter, a sister, a grand-daughter, a niece, a cousin, great-granddaughter, great-niece. And you are loved, welcomed, accepted and celebrated in our family and beyond.

Happy Birthday my beautiful and precious little great big girl.


Blog Widget by LinkWithin