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

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

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

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

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?

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

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