Saturday, 28 July 2012

Merrily we roll along

After a certain amount of unorthodox use (see earlier blog posts for details), the Little Princess' wheelchair decided to celebrate the end of term by going on strike.

We had, a few weeks ago, overridden its ability to take a holiday by bursting a tyre. Two puncture proof front tyres followed shortly by two puncture proof rear tyres, and it decided it needed a new way of getting a rest.

With fiendish timing, the heavens opened at 3.10 precisely on the last day of term. The one day of term when I collect tLP personally rather than letting the bus bring her home.

We dripped a couple of hundred yards from school, at which point the Tank beeped at us and juddered to a halt. We turned it on, it switched itself off. We switched it on, it limped across a drive and switched off again. Leaving me with no choice but to push the 125kilo chair with 25 kilo child on top, in the pouring rain, all the way home. It's not all that easy, when the road is cambered and the chair has no push handles. And steers from the front. Marvellous.

Still, phoned the company and they cane out within the hour and armed with a standard set of override the off setting instructions. Which didn't work. And so the tank went back to the workshop, its second home.

And it's been there a week, and although they have tried everything to get it working, the part it needs had not arrived from Holland yesterday, and so we aren't going to have it back this weekend. Which is a problem, because we're camping from tomorrow, and although tLP has been building muscles wheeling her manual to the park and back, mud and gravel and manual wheelchairs just don't mix very well. And the lightweight manual has two flat tyres and is just a bit too big, and the heavyweight NHS issue manual she can't push outside for more than 20 yards, and not at all on grass.

An immobile Princess is not a good thing. Natural imperiousness becomes exaggerated to a ridiculous degree. And she's stuck with whoever is willing to push her.

And so, I had a look online to see if I could find something, anything, that would get her mobile again for our week away. And there on eBay sat a little yellow Permobil Koala, the very chair we'd looked at when choosing the Tank (Skwirrel2). With three hours to go, no bids, and a very cheap start.

I bid. I won. And not only did I win it, the previous owner had to drive from Cambridge to London this morning and offered to deliver it to us at silly o'clock. And then apologised, many times, for not having washed it for us. I really don't think he understood when I explained it would be spending the next week in a muddy field.

So there we have it. Mobility for the Princess, fastest eBay delivery ever, and either a back up powerchair for next time the Tank sulks, or else something I'm sure I can put back on eBay and make back what we spent on it.

It isn't perfect; the armrests seem stuck at separate heights, the controller has definitely seen better days, the strap's chewed, and the charger is covered in parcel tape. But tLP is finding it easier to drive around the house, loving how it fits under tables so easily, and has gone off with Grannie to put it through its paces. I suppose I'd better get cracking on the packing.

Tia

Wednesday, 25 July 2012

Help

How many physios does it take to position a Mog? Two hours later, we have two very nice positions for Mog to work in. Shame we have to dismantle her bed, the sitting room and most of the playroom to achieve them, but nothing good without sacrifice, right?

And meanwhile today's help came in the form of a respite nurse and carer; just look at what you can do to tLP's hair when she's too embarrassed to protest. Now how can I keep her silent long enough to reproduce it?

Tia

Tuesday, 24 July 2012

New Chair

In an unkind twist of fate, this chair has arrived just as Miss Mog's personal habits appear to have changed once again, making it temporarily (I hope) unusable for the purpose for which it was intended. End of sentence, deep breath. Sorry folks.

In the meantime, it's a jolly comfy chair, it'll be great for showering too on days when she doesn't want to lie down, and there's plenty of growing room - it fits me comfortably!

Tia

Monday, 23 July 2012

Meanwhile, Mog...

 Miss Mog hasn't had the best of times lately. A nasty UTI cunningly disguised itself for too long as a prolonged bout of not sleeping very well and being generally grouchy during the day. As not sleeping makes her grouchy (and her not sleeping makes me grouchy), we put it down to general acheyness, the weather, growing out of her chair, changes in her body shape and general growing up grumpiness. Until she made it very very clear whilst at respite that there was very definitely something more going on, and she needed it sorting now, please, if not sooner.

Oops. One of the hazards of being non-verbal, and not being able to access your preferred means of communication when life is just making everything horrid, is that people put your grottiness down to feeling generally grotty, rather than searching for the cause. Or rather, people scratch their heads a lot and say hmmm, because the symptoms aren't right for the usual causes, but are very right for general nastiness. We'll now add UTI to the list of things we can try to check for next time, but in the meantime, I Miss Mog has had a bit of a poorly time.

Three days into antibiotics, she was feeling much better. Suddenly misery was swapped for giggles; only for the brief period of time when all the painkillers and relaxants overlapped, but still, there was a window when the world was not truly horrible, and there was a possibility that life might start getting a bit better again. Hurrah.

Mog was much much better by Thursday night; fit to go back into respite so I could take tLP into hospital for a sleep study. And so much better on Friday that she managed the last day of term; hurrah.

And I think it's safe to say she's definitely back on top form now. 
Giggles with Grandad are always a good sign. Grandad's great at whistling and jiggling simultaneously, and there's a special grin Mog saves just for him. We like.
And now I'm writing this on Sunday night, and Mog has gone to sleep, without protest, without Nitrazepam, without Chloral Hydrate, without paracetamol or ibuprofen or a mallet. See, I said her not sleeping makes me grouchy in her usual sleeping position, with her CPAP and has the look of a truly settled child about her again.

I'm sorry we missed it until it was really bad, Mog, but I'm very glad you're feeling better now. And, as a side effect, we now have another possible medication to try next time you do have your "I'm grotty and everything hurts but it's really lots of bowel and bladder" type pain, and we do know all the other possibilities are still possibilities, and we are trying to get your wheelchair sorted out, and you are on the list for Botox, and we will do our best to make sure things improve for you. And now I hope you've had your summer illness, and you can now settle down to smiles and giggles and summer fun instead. Any chance?

Tia

Sunday, 22 July 2012

the Little Princess' Boot Boutique

 The Little Princess has been wearing school shoes for the last few weeks. School shoes aren't great on feet which are already marked from the splints, when they are sized to fit over the splints, but you can't wear the splints due to the marking. Add a night away from her nice pressure relieving mattress, replacing it with hospital bed and hospitally stiff white sheets, and you'll get a pretty pattern of black and red bruises and pressure marks, which aren't going away any time soon.

What's a girl to do? To heal, the feet need to be nice and warm, cosily cushioned, free from pressure and not allowed to go too blue from cold.

We'd go shopping, but tLP's powerchair decided to collude with the weather gods and broke down on Friday, in the rainstorm which started at 3.10 precisely, the very moment when all the children were released from school on the one day of the school term when I go and collect tLP myself, on foot. Pushing a 125kg wheelchair with a not-quite-that-much-but-it-didn't-feel-far-off weight child on top home in the rain ranks as one of the less relaxed way to start the school holidays.

Still, Saturday morning loomed and we neither of us really fancied heading shopwards.

Enter, the Little Seamstress. First and most importantly, empty the fabric cupboards in search of the perfect cloth. Sheepskin's a must for the inside, and a nice pink flowery corduroy seemed to be a decent match for some seamless summery slippers.

First step, place your pins.
Next, select a suitable stitch - hearts and flowers were tLP's choice this time; she's clearly in a girly mood this weekend. 
 It's a serious business; our sewing machine works with a start/stop button, so you don't need to be able to work the foot pedal in order to make it go. tLP was not impressed with having to pose for the camera before pressing the button.

Stitch the fabrics together along all four edges. Next, take the rectangle, fold it into thirds, and sew through all six layers of fabric for the toes. Note to self: find a replacement needle before trying the next sewing project.

Slip the slippers on, and get very bored as Mummy marvels at the softness and cosy cushioned-ness of them. Debate the fastenings - buttons, poppers or ribbon? Have a ferret around in the bottom of the cupboard and come up with the perfect stop gap solution - soft and stretchy elastic with pre-stitched velcro fastenings, surely designed with the ankle in mind.*
 And it's a rubbish picture because the sun was actually shining. But there wasn't time to take a better one, because we had to go to Grannie's house and show Grannie and "Do you know, I will tell Grannie I maked them all by myself and my Grannie will say `I don't believe it' ."

And so we went to Grannie's house, and we showed Grannie, and Grannie said "Did you make them all by yourself? I don't believe it!" And there was much happiness in the house
And then we had to take this picture, to prove that the girly mood persisted - although only long enough to model the dress, which was then removed and replaced with more acceptable jeans and a jumper.

And the slippers aren't perfect, but I think as a first ever sewing project they're actually pretty fantastic!

Tia

*not quite - but then what else do you do with the new elastic straps which come with every ten leg bags?

Saturday, 21 July 2012

Totally Unsolicited Product Review

Summertime means camping time, and an unfortunate run of dates means we're going to be camping for nearly three weeks straight. We've lugged a paddling pool around with us in the past to get the girls clean, but there's little dignity in that for a fairly womanly ten year old, so I've been looking for alternatives. And came across these No Rinse Shower Caps.

The instructions say to microwave them for 20 seconds before use, but although we're taking the 'fridge and blender, I think microwave takes us just one small step beyond any hope of considering ourselves as proper campers. Especially if the only use for it would be to heat up shower camps to give a child a warm shampoo.

So, I thought it ought to be tried out cold, before inflicting it on Miss Mog in the middle of a field. 

It's a large cap and full of foamy shampoo; you can't see it escaping from the back and dripping down my neck. Plenty of space for longish hair, which is handy, as the demo photos on the sales site are of a man with man-short hair and an old lady with old-lady perm. Neither of which is either myself or Miss Mog. Or tLP actually; I suppose we might have to pin her down at some point too and get her properly clean. Advance apologies to future fellow campers.


 Definitely enough to get some rather wet hair. And apparently distort my face - possibly beyond all recognition, which would be ok by me.
 Plenty of suds left once the hair well and truly soaked and lathered, so as I was filling out the second half of the instructions ("towel dry to remove all grime and grease"), I thought I'd soak my feet.
 If it cleans hair as well as it cleans toes that have been walking up the garden path without shoes, then hair will be well and truly cleaned.
And it would seem to!

Why post a series of photos of my own hair in various degrees of wetness? Mainly because this blog turns out to be my "go to" place when I know I've put something somewhere but can't find it. So now I have the link to the caps, and I can remind my future self that the unused caps are in that greyish bag towards the foot of my bed; don't throw it away.

Tia

Wednesday, 18 July 2012

Book critic

The Little Princess came home with this in her bag today.

"He is a grumpy king. He is angry and shouts. Don't read this book, he is scary and cross."

Love it! Do want to know what book it was though.
Tia

Tuesday, 17 July 2012

Friendship is the Mother of Invention

video
We like cousins. Cousins are great. Cousins know the same relatives you know, and they share the same Grannie and Grandad, and they know where the toys are kept in Grannie and Grandad's house, and they come with a Daddy/Uncle which is very very cool.

But friends, friends come with an overfamiliarity with the ways of the wheelchair, an understanding of what might be possible, and the guts, creativity, or stupidity, not quite sure which, to find ways to ensure everyone gets to join in and have fun.

I just love the way that these two include the Little Princess. It's not a question of adapting games so that she can join in, although they do that too, without even thinking about it; it's finding things to do you couldn't possibly manage to do without a Little Princess. It's something more than inclusion; completion maybe?

Tia

Monday, 16 July 2012

Cousin Time

 Artwork as created by Brother and Nephew
 Cousins getting into reading.
 I do not like Green Eggs And HAM!
But we do like reading to each other.

Tia

Saturday, 14 July 2012

Toad in the Hole with Bubble and Squeak

Because we needed a jolly English tea tonight after a bracing not-quite-raining stroll through the mud and under the goats at Millets Farm this afternoon.

We found micro pigs. I'm in love; 14 inches high as adults, but these were babies. Apparently they can be house trained and are very friendly. I'm not sure what the Little Princess would think of pigs in her bed though; she gets worked up enough about cats. And I'm definitely not sure what the pigs would make of the toad in the hole, but I'm pretty sure they'd've enjoyed the bubble and squeak.

Tia

Thursday, 12 July 2012

Bunting and Bacon Butties

 What possible reason could so many people have to be up and on the streets at 7AM on a school morning?
 Police out in force. Ignore the nicely polished children in front; they and their parents seemed incapable of understanding "Please don't stand in front of my girls; they can't see anything when you do"
 Floats, bicycles, strangely coloured cars, and slow moving buses with just one or two passengers.
 Recently repatriated and reasonably strange themselves.
 Aha!

Don't blink; you'll miss it. Up at an unfeasibly early hour, stand around in the light drizzle (so refreshing), be fleeced for a couple of pounds for an annoyingly shrill whistle, and join in the jubilation and celebration as the Olympic Flame passes through Our Town.

It is there, in that photo. Under the traffic lights. Friend in pink valiantly attempting to hold back the hordes who decided stampeding the girls was an acceptable thing to do - I'm considering fitting Boadicca-esque blades to their chariots. This for her:



Still, the flame passed, the hordes surged on; we marched home for extra raincoats, on to church for a quickish cup of coffee ("This is my second breakfast today" said one of the cousins, admiringly), and then round to the Little Princess' school, for a third breakfast of more bacon butties, and a whistlestop "This is what an English school looks like" tour for the cousins.


Royal Jubilee, football, tennis, and now the Olympics; rarely has one summer held so many opportunities for flags and bunting and general jollilities of the English and British varieties. I'm sure the weather is merely doing its bit to ensure we maintain our green and pleasantly boggy land in tip top form for all the festivities.

Rain without end,
Amen




Wednesday, 11 July 2012

Beginning and the End

 I promise that I will do my best to love my God, to serve my queen and my country, to help other people, and to keep the Brownie Guide law.
Hello, tLP, the newest Brownie Guide. And goodbye, Mog, the oldest Brownie and very shortly now the newest Guide of all.

Officially fully enrolled Brownies for one evening only, but both thoroughly pleased about it.

Tia

Saturday, 7 July 2012

The Circus is Coming Cancelled

Mog's special Birthday treat today. A bit belated, but timed to allow for the inclusion of the Tanzanian Cousins, now officially the Back-In-The-UK-And-Hunting-For-A-Place-To-Stay Cousins. Banishing their parents to the wild North in an epic quest for employment and housing, a trip to the circus sounded like an excellent bribe diversionary tactic, for the smalls left behind.

I'm sure it would have been.

However, rain without end means that the Circus has been cancelled. It's still running, but the field it's based in is flooded and inaccessible by wheelchair, and the Big Top is so squelchy that patrons must be willing to sit on raised bench seats. They refunded us.

Which left us with four smallish children, one of whom had been promised a Birthday treat, two of whom were needing to be kept busy, and one who is just generally ecstatic to have two real live cousins she can actually reach and touch and play with, rather than wave to on Skype.

And the rain it raineth every day. And every minute of the day. And so there wasn't much point in even attempting the walk around the arboretum near the circus, and there wasn't much excitement in watching the animals at the garden centre, not when two of the four have been used to regular safaris and encounters with elephants and giraffes and other largish wild things.

So we did what we Beales do when the going gets wet - we got wetter. And went swimming.

Turns out, the Coral Reef has a jolly nice changing room with decent height adjustable bench and hoist, a pool hoist, a variety of slings and foam swimming aids, and staff who are super helpful. It's nice and warm too. Just the teensiest bit overcrowded on a wet Saturday afternoon, but much fun was had. Multiple Beale Pileup, with one cousin prefering to dive and blow bubbles whilst the other preferred to try riding the inflatable pole, one child in an entertainingly floaty wet suit, and Miss Mog content to drift gently. Not her best day; but she did at least stop moaning for the whole time we were in the water - considering how she's been the rest of the day, I'll take that as a definite positive.

Small children turned the back of our bus into some kind of aviary on the way home. Squeaks and whistles, hoots and crows, and Mog joining in with the best of them - a vocal game she could share as an equal. Almost enough for it not to be hugely irritating to the adults in the car. Almost.

Home for fish and chips, and Mog's managed to hit the ceiling, walls, floor and my Tshirt. Pureed fish has a pungent and lingering aroma.

And then visitors returned to Grannie and Grandad, and the girls fell into bed. The Little Princess has been asleep since I hooked her up to her Nippy; Miss Mog has decided a loud moan is preferable. Multiple doses of diazepam, pain relief, lots of bowel massage and deflating, and she is still distinctly uncomfortable and generally unimpressed with anything in life that isn't Grandad jiggling her arms of small children being shrill. Or Coral Reef water. Seizure? Spasm? Pain? Boredom? Hips? Bowels? Spine? I don't know, but it turns out I'm not a particularly nice person, because my ability to be sympathetic is running out rapidly.

Meanwhile the cats are distinctly huffy. This rain is apparently all my fault. The presence of noisy extra children is also all my fault. And Benjamin appears to be blaming me for his aches and pains too. Whilst simultaneously resisting the syringe full of pain relief. Perhaps I should give it to Mog instead*

The advantage of swimming over the Circus is that the children come home clean and tired and ready to sleep. Mog's scuppering that one nicely, but I believe the theory holds sound for the other three. There's something very satisfying about watching small children leap and wriggle and splash and cheer each other on.  And there aren't many other places I can cuddle Mog for an hour or so and move around freely at the same time. But now I think I need to go and find her off switch - The Downing Family are keeping her at a quietish grumble rather than out and out screaming, but I'm not sure that I can listen to them all night, even if she can.

 Tia

*Not seriously, no need to contact SS. 

Thursday, 5 July 2012

Neuropsychology

The Little Princess and I are up at hospital once again for a day of neuropsychological assessment. I hope we pass. If you don't hear from us again, please assume we have failed and been shut into some minor ward of the West Wing until we have a more normal psychological profile.

Actually, scrub that. We've already failed. What should be a solo assessment with me enjoying a peacefully tedious hour or so in the waiting room has, instead, become a painful hour anchored to an office chair as a small child wriggles on my lap. I am, officially, deaf, blind and mute; part of the furniture and providing the security blanket which will enable tLP to concentrate on the testing rather than worrying where I have gone and whether I will come back.

I am, in practice, not quite so blind or deaf. And am filing my own internal report, full of edifying snippets such as "ooh she likes reciting numbers" and "hmm she doesn't know the easy way to group things, does she?" Biting my tongue not to rephrase questions in a way she will better understand. I am unable to bite my tongue when her answer to "what does brave mean?" is interpreted as "you put your hand in your belt" rather than "you pull your hand tube out."

Turns out, no surprises, she's not so hot at mental arithmetic. She goes a very long way round the houses to find the right answer to fairly straightforwards questions. And she concentrates far better when her hand strays to touch mine, staying connected in order to let her mind roam. I wonder what the report will show

Tia

Wednesday, 4 July 2012

In which Benjamin Bounces

 This is the face of a loopily recently anaesthetised cat.

And this is the story of how and why.

Both cats like to take walks with us. I think Grolly prefers it when it's just her; Benejamin prefers to walk beside us, pause and bounce onto Grolly's head, and then spring back to us. I think it's the colouring; Tigger blood runs deep. Anyway; she's not impressed and much prefers it when we leave him inside.

It was Benjamin's turn last night though, and he decided to accompany us to Brownies. Both cats usually stop when we reach the garages just past our house, but occasionally one of them will venture across the road before panicking and running back. We don't encourage the road crossing. Actually, Grolly gets halfway across the road, then panics and starts crying for help. I've had to post her back home more than once before now.

Anyway, yesterday, Benjamin decided to be more adventurous. Crossing the road, he walked to heel, cat-style. Which means, for the uninitiated, he walked between my heals and over my heels and mainly under my heels, causing an increasing amount of worry as we got closer and closer to the Big Main Road where Gotcha met his end last summer.

I was about to give in and carry him home, when a car drove past. Panicking, he ran for home; unfortunately running directly into the path of the oncoming car, hitting the wheel with an almighty thud and a crunch and a squeal and a cat bouncing along the road.

Add a seriously shaken driver, an overinterested canine witness, and two girls late for Brownies. A brief pause, no pools of blood and incredibly, he had picked himself up and raced off, so I decided to drop the girls at Brownies before going hunting.

He limped his way home, and was seriously underimpressed to be scooped up and taken to the vets for a thorough overhaul. Initial exampination showed no obvious injury other than two scuffed paws, but some creaky hips which would need X-raying in the morning.

Home then, with instructions to keep him in my room overnight in case it turned out he had done something to his diaphragm. Benjamin quite enjoyed the being shut in my bedroom bit, but was distinctly less impressed with the whole starve him from tea-time ready for anaesthetic bit. At 4 AM, when he'd moved on from licking my chin to chewing my nose, I decided his diaphragm was officially not ruptured, and banished him to the sunroom instead. It's soundproof; useful in a cat prison.

Back to the vets, who knocked him out and X-rayed him. The Little Princess is impressed about this and thinks he must be very naughty; she always sits still for X-rays and doesn't need sleepy medicine.

And then a few hours later a phone call. Hips fine, so they'd looked at his chest. Chest fine, so they'd looked at his knees and elbows. All fine, so they'd checked his feet and legs. And everything absolutely fine.
 Two little scuffed grey patches on his paws the only visible signs of any injury at all.
 The need for cuddles and thumb sucking revealing a little more of clinginess he's been showing ever since though.
Suddenly, he looks very young again.

I have a feeling he's used up more than one of his nine lives though; and if you were the woman driving the grey mercedes (no it wasn't you, A!), then I'd like you to know he really is absolutely fine; apparently Benjamins bounce. He'd better not try it too often though!

Tia

Monday, 2 July 2012

Princessly Progress

We had tLP's Annual Review last week. A group of people around a table, all talking about the educational progress achieved, the challenges ahead, and what we think tLP is going to need in order to thrive.

We talked about her current levels of achievement. She's doing brilliantly. Brilliantly for tLP looks slightly different to brilliantly for other children; however she is gently moving away from P Levels (the earliest learning targets) onto level 1s (where the average child would be when a few years younger than tLP). It's great. It's exciting. tLP is bursting with reading and writing - every other word she utters is broken down "I am fuh Ih nnnn ishd. Duh unn, done". Makes for a slow conversation, but it's all coming together. In maths, too, she is moving away from the bottom of the page. She can count in ones and twos and tens, although learning to count in tens is making it harder to cope with the teens.

She'd have been doing even better, had she not lost a significant amount of ground following her surgery at the beginning of the year. Which makes it even better that she won't now be having more surgery until at least the New Year. And if we can find a way to straight jacket her into her wheelchair, to give her an upright posture which is equivalent to her lying down posture, then we may be able to delay spinal surgery for longer yet. This would be a Good Thing - she's a fairly small seven year old, and I'm not sure we want to leave her this size forever.

In the meantime, we need to work on not letting her tummy get any bigger. And the scan which gave us good news about the position of her spine, gave us bad news about the quality of it, so we need to be finding ways of increasing her bone density. There's not going to be a lot of point in putting her through rodding surgery, if the rods are being fixed into bone not strong enough to support them.

It's surprising how little food you need when you are largely inactive. Most important then, that what she does get is of decent quality. Now for Miss Mog that's a relatively straightforward process. I find nice balanced and nutritious food, whizz it up, and push it through her gastrostomy. Fruit and vegetables and complex carbohydrates, decent amounts of a wide range of proteins, a sprinkling of nuts and seeds and plenty of fish and chicken, leafy greens and fresh salads, herbs from the garden and peppermint drops from the health food shop, and she is glowing and bursting with good health. And all at under 800 calories a day.

tLP however prefers to eat most of her meals. And has some distinct preferences as to what those meals should be. School dinners have been great; she will eat a far wider range of foods at school and in public than she will at home with me. This gives me two meals a day to be building up her bones. She'd eat cheese until the cows come home (or until the cows get tired of coming home only to be stripped of milk to turn into cheese which will then be eaten by tLP), she'll slurp yoghurts and drink milkshakes and eat fish and love it. She'll eat broccoli and carrots and begs for asparagus (with plenty of butter, naturally). But she'll also become more and more roly-poly, and her lap is small enough as it is.

And she is loving her current swimming lessons, and would love to be more active, but weight bearing exercise is a little tricky when your legs won't bear any weight, and when your brain is a little bit too fragile to be trampolining or horseriding or playing on bouncy castles. And even rolling over and trying to crawl is difficult when you've probably just re-dislocated your previously repaired, pinned and plated hip, only there's no way of knowing for sure because the urgent appointment to check it out isn't for another week, and you have no feeling in your hips so we can't be guided by pain.

So I'm left with power breakfasts to try to squeeze everything she needs into. She chooses to have a breakfast smoothie via her tube most mornings. Partly because that's what Miss Mog has, partly because she's too busy in the mornings to take the time to sit and eat breakfast, and partly because coordinating that chew and swallow is a little tricky when you're already having to remember to breathe after a night with a machine doing that for you.

Anyone got any good recipes for nutrient dense, calorie super-low combinations? Most mornings, both girls end up with multiple fruits, the occasional vegetable (Although since I wouldn't personally have spinach for breakfast I don't really like inflicting it on them), milk, oats and a handful of seeds and nuts. Pale pink from raspberries or a beautiful deep purple with blueberries, a rather offputting brown from prunes and apricots, or a soft peach from citrus fruit. Sometimes smelling so beautiful I have to make a triple batch and start my own day the same way (though without the tube).

And then there's the all important vitamin D. We are finally having some sunshine, and tLP is hiding in the shade, sitting under giant hats or refusing to go outside at all. So indoctrinated with the fear of the sun, the risk of skin cancer and sunburn, that she is refusing to go out without protection in place. I read that Ricketts is on the rise again; I wonder if there have been studies done assessing the risk of Ricketts as opposed to the risks of cancer? Meanwhile I'm fighting a losing battle, attempting to get her to brave a gentle glow, and surreptitiously substituting fortified cereal for the porridge oats whilst being annoyed with myself for not managing to manage without the artificial additives.

And all this whilst still making space for an occasional McDonald's or Dominos Pizza, for these are the things which delight her soul.

tLP's imagination has taken off now too, and she'd like the world to meet her "Imagination Babies". These take the form of Tyler and Zach (both boys), who are sometimes twins, occasionally triplets (but one was died) and sometimes big brother and little brother. Tyler likes to climb back inside tLP's tummy and be a tiny baby again sometimes. Zach usually runs across the road and has to be tied into the buggy. They both like baths, but neither of them wants to go to bed. So far, so sweet. Until Tyler and Zach keep her up at night, or until worries over whether they are tucked in causes her to wake up at 2 and ask me to check. They have their own car seat, suspended midair between her wheelchair and my driving seat. They have a wide variety of different kit, and can need to go to hospital at strange (and inconvenient) times of day. They are strong believers in the goodness of blended food, but they don't like beans or spinach. Sometimes they are baby dolls, sometimes monkeys, and sometimes they are dogs and have to go for walks on leads. But they are always Tyler and Zach.

Tia

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