Wednesday, 30 June 2010

Something on the mind.

Ever wished you could see inside your child's mind? I had that opportunity today. To see inside Mog's skull, neatly sliced up into sections, bottom to top and then front to back (or possibly side to side; I lost track of the nose and ears).

Mog can think. And communicate. Mog enjoys music, feeling wind on her face, and kicking small children. Mog likes to choose shoes and clothes and hairbands. She thinks it's funny when other children are told off. Mog loves to be bounced around, whether it's on a trampoline or a rollercoaster, she likes riding on 'planes and boats and trains, and she enjoys swimming and having showers.

The above stuff is important. Why? Because, working from the bottom up, Mog's scan shows a nice intact brain stem. This is good, we like solid brain stems, they are kind of important if you want to go on doing things like breathing and keeping your heart beating. That's the good news. And then, as the scan moves up through her skull, instead of seeing increasing amounts of grey matter, we see instead a big black hole. Little shreds of brain cling like cobwebs to the dusty shed roof of her skull. Two, nicely matched black holes, where all the thinking parts of her brain ought to be. Fluid replacing them. Not too much fluid, no signs of pressure; this is also good. And no sign of further damage - no stroke, no hydrocephalus, nothing sinister. Just this massive, overwhelming "insult" which was her first welcome to this world. She shouldn't be able to do any of that.

So, CT scan shows that there's not much inside Mog's mind. Let's move on. EEG results next. And this shows, as far as I can interpret EEG-speak, that the whole brain activity is somewhat slower than that of people whose brains are more intact. That there are constant little discharges coming from all over the place. And that of the two larger seizures observed during the course of the recording, the first (Absence followed by her own little fitty features) originated in the left hemisphere. And the second (lip smacking, twitchy, other bits and pieces) originated in the right. Which at least means we don't need to worry about whether removing bits of her remaining brain might help.

Interpretation for Mog? Essentially, everything we thought definitely was seizure activity, is. Everything we thought might be seizure activity, is. Some of what we hadn't considered to be seizure activity, may be. And when I say she has seconds between seizures when she's alert and responsive, and then she goes back into a seizure, and it can be a good few minutes before she's back with us again, which can be for minutes but can only be for seconds again, that is in fact exactly what the recording shows is happening. So that's nice for her...

It is good news there's nothing new on the CT. The seizures have not stolen further brain cells. On the other hand, that was a nice rational explanation for what was happening. Turns out, although Cerebral Palsy is not supposed to be a progressive or degenerative condition, Mog is just one of lucky ones who find that it is, and who have increasing problems as their bodies grow.

So, we have some kind of a tentative plan. We're going to be trying a different antispasmodic drug. Then, when we know how that's affecting her, we'll try increasing her antiepileptic medication, one at a time from her existing ones. And if those don't help, we'll start going through the chart again in a slightly different combination. Somewhere in the middle of that, we'll probably celebrate Christmas, and maybe by this time next year we'll have a happy smiley child with fewer seizures and no spasm at all?

Tia

Tuesday, 29 June 2010

June

June is jasmine and raspberries, jostling for space on the trellis.
June is honeysuckle sunsets, the air rich and delicious.
June is the very best of Birthday months; strawberries and cream teas, sweet sunny weekends and the promise of summer.
June is for rolling and stretching and relaxing in the warmth of the evening sun.
June is for thistles underfoot, and for sneezes and snails and slugs.
June is sweet peas jumping their boundaries and spreading across the decking.And for flowers gone wild, a riot of colour, weeds and planteds indistinguishable.
And June is the first of the windfalls, hard and wooden, nature's marbles, made for stalking and chasing and tossing and rejecting.
June is heat, and warm rain, the combined promise and threat of summer. June is planning for the holidays and collecting the first of the fruits, mowing the lawn and playing with water.

June is going to school without jumpers, and losing sunhats, and the sticky artificial scent of suncream. June is Sports Days and Fêtes and boats on the river.

June is Midsummer, and the beginnings of summer, and the beginning of the end of the school year. June is June.

Tia

Monday, 28 June 2010

Today, I could post about the cats. About how Grolly is getting her confidence back, about how the lizardlike texture of her stump is now turning into lizard with three day stubble, about how she's starting to want to be out and about again, and about how much I miss her beautiful tail even if she doesn't appear to.

I could talk about how Gotcha won't let me near him in case I tackle his tangles again, and how Goway thinks it's too hot to do anything but lie, spread-eagled, across our front ramp. And I could talk about trying to feed one cat food dosed with painkillers whilst trying to keep the other two from the same bowl. But it feels a bit boring really, so I shan't do that.

I could talk about how the heat of the weekend seems to have built up and sent Mog fit fit fitting from four o'clock this morning, leaving her breathless and tired for the rest of the day. But it's depressing and we are seeing the neuro on Wednesday so I'll save seizure stuff for then.

I could write about how Little Fish came home with a little label reminding me of my failure to find her sunhat. And about how it's been too hot for her to wear her brace, but how she's now complaining of back-ache when she isn't wearing it. And how she's somehow ripped it into two pieces so even if it were cooler she still wouldn't be able to wear it. But it's tedious, so I'll skip it.

I could wax long and lyrical about how the gardener has cleverly strimmed all the bark off our tree so it is dying in the summer sun. And how he has pulled up my bedding plants considering them weeds, but left the thistles and grass in one bed because he thought I'd enjoy doing it myself. But it's frustrating; almost as frustrating as having replaced Bob with a new builder, who has now almost immediately gone on holiday.

I could post about the joy of having 25 Guides and 200 water bombs. But I think you had to be there. And I could post about the rain which is falling gently against my open windows, large drops of sweet, smellable rain, bringing the temperature down and refreshing the grass and the lavendar outside the window, carrying the honeysuckle and lilac in wafts through the house, and leaving brilliant droplets on my raspberry canes, which each day ripen just enough raspberries to sweeten one bowl of cereal. But I think I might just go and open my bedroom window, and fall asleep just breathing in the rain.

Tia

Sunday, 27 June 2010

Keeping cool


Add an occasional splash in Mog's direction, and the faintest hint of a breeze, and it might almost not be roastingly hot in here.

Tia

Saturday, 26 June 2010

Mog's Day

The good thing about a Saturday morning EEG is that you get to stay up late on Friday night.
The bad thing about a Saturday morning EEG is that you have to get up early on a Saturday morning.

The good thing is there's plenty of parking in the hospital, and a Grannie available to look after your sister.
The bad thing is there's no one in reception and the neuroscience wing is eerily deserted.

The good thing is that the melatonin you get for sedation seems to take the edge off everything and make you very happy and relaxed.
The bad thing is that happy and relaxed does not equate to many seizures.

The good thing is that you have so many seizures anyway they do catch a few absences on the recording and can stop the recording early.
The bad thing is that you will then fit for most of the rest of the day as a delayed reaction to all the strobe lights.

The good thing is that, having slept and fitted most of the day, you get to stay up late in the evening.
The bad thing is, this leaves you and Mum with a spot of jetlag without the joy of travelling far enough to justify it.

The good thing is, the Saturday morning slot means you will have had the EEG before the neurology appointment you have on Wednesday. As requested by the neuro.
The bad thing is, the doctor who reads the EEGs is on leave this week, so although the letter of the request has been met, the report will not be ready and waiting.

Overall good or bad? Find out on Wednesday I suppose.
Tia

Friday, 25 June 2010

Little Fish, Lot of Fear

Little Fish is now officially afraid of
  • Flies
  • Wasps
  • Bees
  • Daddy Long Legs
  • The front door being open in case a dog runs in
  • Holding cat food in case a dog wants it
  • Anything feathered
  • Anything on four legs if she is on the floor
  • Being late
  • Father Christmas
  • The Tooth Fairy (apparently this is a strange creature who might take all her teeth away, and I now have to buy her teeth from her so the tooth fairy won't come looking in her bedroom. Why do people tell children these things? Or, why doesn't my child manage to process this in the same way other children do?
  • Waking up too early or too late
  • Crashing the car
  • Aeroplanes and helicopters, lawnmowers and chainsaws and anything else loud and near her.
  • Walking past parked motorbikes in case they somehow drive off by themselves.
  • Falling off the edge of her bed despite not having the ability to roll over in bed.
  • That I might walk out of the house one evening and not come back
  • That I might pull Mog's tube out
  • That I might bang Mog's chair
  • That Mog might fall out of bed or off the bench or catch her legs on something.
  • Change in routine
  • My Fair Lady
But she is no longer afraid of
  • cats
  • dogs at a distance
  • thunder
  • Mary Poppins
  • parties
  • trying new foods
  • meeting people.
  • staying home when I go out
  • going to school.
Yesterday I watched her sit on the stage at school and say her special line at her school assembly, and sit still and sing a song about how running and jumping and skipping makes for a healthy heart (mmm, good choice, get her really aware of things she can't do and tell her she'll have a heart attack if she doesn't). I then left her happy to be left and excited about being taken home from school by a babysitter. And I watched her follow the other children half a beat behind in all the songs, and looking now visibly slower than the other children. And I sat and thought about all the things she actually can't do, and then all the things she could do but is scared about, and I wondered where her future might go.

Today I watched her at a school friend's disco. First party of the year she's actually managed to attend without melting down at the thought. And only a minor strop about not needing to take paper and pens with her. And she danced, and she won musical bumps (hard to lose when your bum is permanently attached to your seat!), and she did the limbo and the hokey cokey, and she sat on the floor and ate her pizza with the rest of them, and all evening long she was surrounded by boys and girls keen to dance with her and helping to push her and swing her partners by the hand, and crowding in around her to help bounce a space hopper and do the conga, and I watched her look back at me just a few times but mostly throw herself into the party. And at the end of it she said "thank you" very prettily, and she waved at everyone else as she went, and I thought probably her future is right where she is, for the foreseeable bits of it at any rate.

I could still do with something to reduce the fear and panic though.
Tia

Thursday, 24 June 2010

Dear blogger

Ha ha very funny.

Note to self and others.

It's never a good thing to be running late by half past six in the morning. And efficiency is all very well, and flinging a load of clothes onto superwash is good too, but please consider the possibility that gathering all school uniform dresses into the superwash is just possibly going to cause problems when you come to dress your child a few minutes later. And if you absolutely have to wash all her summer uniform at once and on a school day, next time please don't make it the day your daughter's class is running the school assembly.

Dear carer,
I've seen you arrive. You park your car, take your glasses off and put them in the glove box, feel about in the passenger footwell for your handbag, leave your car, lock it, put your keys in your handbag and cone to our door. Then you spend the next hour getting me to read things for you, asking me over and over again where things are, failing to locate a green Vaseline tin on a white bathroom shelf because there are several other green things also on the shelf, and apologise the whole time because you have left your glasses in the car. Please stop leaving your glasses in the car! I need to get on with other things, not run around after you.

Dear cat,
You're unhappy. I get that. It's not much fun stuck in one room. It's even less fun though when you have poo'd all along every wall. Desist.

Dear life,
Why do you feel the need to schedule four equally important and mutually incompatible things all at the same time today? And, did you really have to choose one of the hottest days of the year to cause my freezer door to bounce open again and sit defrosting for a full day?

Dear locals,
Anyone want bread, Quorn, runny icecream, apple purée, some mildly dodgy seafood or some wobbly Fab lollies?
Tia

Note to self and others.

It's never a good thing to be running late by half past six in the morning. And efficiency is all very well, and flinging a load of clothes onto superwash is good too, but please consider the possibility that gathering all school uniform dresses into the superwash is just possibly going to cause problems when you come to dress your child a few minutes later. And if you absolutely have to wash all her summer uniform at once and on a school day, next time please don't make it the day your daughter's class is running the school assembly.

Dear carer,
I've seen you arrive. You park your car, take your glasses off and put them in the glove box, feel about in the passenger footwell for your handbag, leave your car, lock it, put your keys in your handbag and cone to our door. Then you spend the next hour getting me to read things for you, asking me over and over again where things are, failing to locate a green Vaseline tin on a white bathroom shelf because there are several other green things also on the shelf, and apologise the whole time because you have left your glasses in the car. Please stop leaving your glasses in the car! I need to get on with other things, not run around after you.

Dear cat,
You're unhappy. I get that. It's not much fun stuck in one room. It's even less fun though when you have poo'd all along every wall. Desist.

Dear life,
Why do you feel the need to schedule four equally important and mutually incompatible things all at the same time today? And, did you really have to choose one of the hottest days of the year to cause my freezer door to bounce open again and sit defrosting for a full day?

Dear locals,
Anyone want bread, Quorn, runny icecream, apple purée, some mildly dodgy seafood or some wobbly Fab lollies?
Tia

Tuesday, 22 June 2010

Grolly Aint Got No Tail At All.

From thisTo this
And now

this
And two days for this to begin to heal, or it'll mean total amputation.

She has however wee'd all over my clean and matched socks so her bladder function is fine. And has poo'd on the vet's table, so looks like that's working fine too. Now just to get her better and persuade her her dignity is intact.

Tia

Monday, 21 June 2010

Thereby hangs a tail.

I knew today wasn't going to be great when it started at half past three. CPAP's great; it keeps Mog's airway open and gives us all a good night's sleep. CPAP's not so wonderful though when the CPAP wearer needs to shout for assistance; a full face mask muffles the sound somewhat and it takes longer to get through to yours truly. Oops.

Mask off, one hysterical Mog thrashing about in bed getting louder and louder, body twisting and arching and stiffening as I watch in awe and try to work out what to do. Medication, yes. And comfort, but getting one long and pretzeled child out of her bed without severing ankles or nose (these being the top and bottommost edges at this point. No, I don't know where her toes go either) and through her bedroom door isn't the easiest of tasks.

Into the sitting room and onto a chair. Some gentle humming and she settles, repretzelling herself whenever I shift a leg or even think about plonking her back in bed. So I log on, have a nice chat with a friend whose new baby is keeping her up also, and two hours later Mog is somewhat looser and ready to go back to bed, if not to sleep.

I debate the pros and cons of another hour's sleep vs an hour mindlessly surfing when my router gets huffy and kicks me offline anyway.

Grolly joins us during this time, and her tail, normally a proud flag waving over her shoulders is instead dragging behind her. She wants lots of fuss, but cries when I touch the base of her tail. I resolve to call the vet later in the morning.

Little Fish wakes full of woe; "I cryin' acos I love you and I not want to go to school. And I wanna go to school and not be here." Hmm. Toast and marmite seem to help.

Two girls go to school, and I call the vet. Then spend forty-five minutes hunting for Grolly, who has squeezed herself through a one inch gap in the kitchen door and turns out to be hiding in the middle of the rose bush.

We get to the vet, who pokes and prods and clips and discovers not just a general strain but a broken tail. We make an appointment for tomorrow, for him to amputate. He gives her a 24 hour pain relieving injection (side note: what is this injection, and can it be given to humans too? I like the idea of not having to give meds in the middle of the night), and tells me to keep her in until the morning. I shut her in the sunroom, where she crawls into the sewing cupboard and curls up quietly on my new skirt lengths.

And then I come home, and try to distract myself from the fact I've just agreed to have her tail cut off, and from the fact that she's sitting in a cupboard with a tail which is sore where it has feeling and numb where the damage has been done, by getting the computer to recognise the printer. We've had the Mac nearly a year now; it's time it consented to read the software and let me print more than one photo in the top corner of each piece of paper.

I download drivers. I restart the computer. I reinsert the disc, Mac rejects the disc. Repeat for the next two hours, before stomping off and resolving to sign up for the new mega-deal which will give me superfast broadband, telephone, television and 50 free photos printed each and every month for less than the cost of my present cuts-me-off-every-few-hours-just-because-it-can broadband service. I phone the number, get put on hold, with a very gentle soothing boingetty binglediddledeedee music and recording of a woman talking about all the very special amazing deals I can get, all in a very you-are-feeling-very-sleepy voice. And then a real live person starts talking to me at the other end of the phone, and I am so disconcerted by this that I cannot remember who I am calling, why, what my name is or what I was actually doing. So I apologise and hang up.

Phone for a new inco collection, manage to leave a message on that answerphone, then manage to find answerphones for speech therapy and something else I've already forgotten.

And meanwhile Grolly crouches in her cupboard, wondering why her tail doesn't respond to her wishes any more. And Gotcha sits outside the room, wondering why his playmate doesn't want to tumble with him.

Tia

Sunday, 20 June 2010

Hanging around

The only thing better than swinging in a hammock tied to a tree by a river
Is swinging in a hammock tied to a tree by a river with your sister!
Housegroup barbecue today. A summer social, and a chance to say goodbye to friends who are moving away.

About eight years ago, I was walking through our shopping precinct with Goldie. Goldie was doing her usual "I'm excited about the possibility of eating a burger" thing; squealing and rocking and waving her hands up above her face, grinning and giggling, and generally being loud.

A few shops up from us, a little boy stopped. "LOOK, Mummy!" he shouted, pointing at Goldie. His mum looked, embarrassed, wondering what her son was going to say, as he chatted on at the top of his voice. She held his arm and encouraged him towards their next shop, but he turned around anyway - "no LOOK, Mummy! There is MY FRIEND!"

He's a bigger boy now, and he's moving away, with the rest of his family. On to new schools, new lives, new friendships. And I'm sure he'd be dreadfully embarrassed to be reminded of his three year old self. But he won't be forgotten.

Tia

Saturday, 19 June 2010

The great escape

Eight years ago, in a village not terribly far from here, a woman went into labour, and the labour went not terribly well. But at the end of the labour, a beautiful bonny baby was born.

It was a rocky start, and it's been a rocky road ever since then, but hey, Mog, you made it to eight! Happy Birthday, sweetheart.

It's been a week of celebrations; various different family and friends visiting at Helen House, and presents from them and from Helen House too. Today we'd planned a big celebratory day with an Awfully Big Adventure involving trains under the sea. But it also involved a Very Long Time sitting in a wheelchair, so we decided to shelve it for another time.

So, no Great Escape to France for the day - and several adults very relieved about that. But, one trip to a little sister's school Fete,
One Skype session with an Uncle and Aunt overseas. One lovely Birthday Lunch with nibbles of buttery bread and a lick of icecream (and three hours of hiccups, but perhaps we'll pretend the two were unrelated). And then, inspired by Little Fish singing songs from Mary Poppins, we decided to go fly a kite.


Big fun all round, and just the right amount of wind. And then great big wild excitement; Little Fish let go of the string!
video
Run, Grandad, Run! And put the video down, Mummy; Run, Mummy, Run! And the kite disappeared over the trees and landed in a garden. Grannie and Grandad pushed their way through the trees, trying to memorise the shape of the back of the house, in order to walk around to the fronts and beg for the kite's return. A white house, apparently - with runner beans in the veg patch far inferior to Grandad's.

And then, oh happy day, a gust of wind, a tug on the string, and the kite was suddenly free from the beans, and soaring back up and over the trees, and free again! Too free; it took three of us, several shoes and a piece of bark to manage to wind the string in and subdue the kite sufficiently to collect it up and take it home.

We dropped the kite off with Grannie and Grandad, and then came back to our house for Birthday Cake.
Happy Birthday, Mog, and many happy returns of the day.

Love,
Mummy Tia

Friday, 18 June 2010

Full House

47 fish swimming in a slightly murky tank
3 cats curled up in corners of the sitting room
2 girls sleeping peacefully each in her own bed
1 contented me hearing noises and watching the numbers and generally feeling that all's right with the world.

Tia

Thursday, 17 June 2010

Today, nothing happened

We got up, got dressed and breakfasted. Got to school on time, LF went in and I walked home. Went to Waitrose. Came back to find the bin men had refused our grass clippings and left them on the drive. Loaded them into the van so I could get past them, thinking I'd take them to the tip late. Remembered I can't get this bus into the tip any more; left them festering in the van in the heat of the day. Ate lunch. Pottered happily. Went to fetch Little Fish. Walked home, slowly. Had lots and lots of cuddles and a meltdown about birds outside and flies inside (her not me, But I might start joining in if she doesn't get over it soon). We called Mog, had the low down on her day but didn't speak to her as she was lying in bed under a tree in the garden. Had tea. Little Fish went to bed.

Another boringly normal day.

Mog doesn't do very much, if you look at her as an outsider. She sits. Or lies. And coos and moans and twitches. But as an insider, she brings so much to our family. Little Fish turns to her, repeats everything I say to her, insists on her having a particular spot in the sitting room and appoints herself overseer of all care requirements. And Mog is silently, wordlessly, sarcastic about her bossy little sister.

Little Fish drops a crayon, Mog twitches, and I get up to pick up the crayon and put Mog's arm back on her lap. Small busyness.

I laugh at something, Mog smiles. She laughs, we all laugh. I get cross with double glazing salesmen; Mog stiffens in her chair. I relax, she calms herself down. She gets worked up, I rock her; the curves in her body fit the more padded curves of my own, her twists and turns notch themselves around my hip. Lounging around on a settee or a bed, my bent knee prevents her leg from flopping inward, her head nestles under my chin; she fit there when she was five months old and she fits there still, nearly eight. We have grown together (her upwards, me outwards). She is my shadow, we are each other's echoes.

And she is not here. Twelve hours; one peaceful night and then a few hours hustle and bustle, and then we will be together again. These breaks are necessary. She gets to lounge around in a bed which has been pulled out under an enormous tree. I get to store overheated grass clippings in my van, go shopping with both hands on the trolley, sit through the day not jumping every time the phone rings assuming it'll be school, and sleep all night without jumping up for non-existent alarms. Little Fish gets to stay at school, to pootle home slowly instead of racing the bus, to have a nice calm unhurried morning without me dropping syringes all over the floor in the race to get everything done and write in the homeschool books first. She gets to have the option of going to the park, although she chooses instead to hurry home and phone Mog's carer. It is good for all three of us. But better will be tomorrow, when my shadow and I are sewn together again.

Tia

Wednesday, 16 June 2010

Pruning the cat

As Grolly slept and Goway napped,
We got Gotcha, and he was pruned.
But how can this much hair be removed from this beastie
Without anyone really noticing the difference?

And, how can he take up as much space as my five year old daughter?Mad.

Also mad (I hope) was the receptionist, who asked me as I waited whether my children were still at school. I'm 36. Do I really look old enough to have adult children? Hmm. On second thoughts, don't answer that.
Tia

Tuesday, 15 June 2010

Interlude

Mog's in Helen House. Two new medicines for her to try over the next three days, a third for us to think about as a new back up when necessary. I left her shouting "yes" (or hanging her tongue out as far as she could get it whilst flat on her back in bed, anyway) both at the idea of trying something new to help the spasms and at the thought of not having to bend in the middle unless she wants to for the next couple of days. I hope it helps.

Little Fish is in bed, and I am at a loose end. I just went into the kitchen, saw the drugs cupboard and realised I hadn't drawn up Mog's meds. Went to do so, then remembered I didn't need to. Came back, sat down, and realised I couldn't see the SATs monitor. Went to shift the clutter, and couldn't hear the clatter of her lights nor the hum of her music. And then remembered she wasn't here. The sitting room looks twice as large without her chairs, the cupboard looks bare without her meds, and I keep hopping up because I can't hear her CPAP either.

Sitting here earlier, I was getting cross because her carers were so late. Then realised we didn't need them. Got Little Fish into bed, and she was disconcerted because she couldn't kiss Mog goodnight. Came back into the sitting room and turned around to do my usual "Phew, that's your noisy sister settled, what shall we do now?" whitter, and realised I was addressing an empty room.

It is good that Mog is in Helen House. The wheelchair service called back today, confirming that the end of July is the earliest they can possibly do anything at all about providing a more comfortable seat for Mog, and even that will just be an assessment, any new chair will then have to be ordered. She might have something for September, if we're lucky, and the proposed option does work. When we saw them back in May this appointment was supposed to be a back up, this probably won't work but let's look at it to dismiss it but carry on with a different change at the same time, thing. And which has now turned into an oh, we don't want to book the thing which we thought was more likely to help until we've dismissed this, thing. So, for three days, Mog won't have to sit in the chair she used to love but which now makes her so uncomfortable she sobs at the thought. And that's three days closer to the temporary stop gap, won't be ideal but will be better than this, buggy we've ordered.

It's good too that the palliative care doctor can review Mog and suggest some medicines which might help. It's great that she will be able to be monitored and within reach of specialist help should there be any unforeseen problems with them. And it's good that her pain will be kept under control. I'm not sure I needed to be given a leaflet to start to fill in, giving details of my plans for her funeral (amongst other, more immediately useful care planning considerations). But it's good to be able to think about these things sometimes.

It's great that I now have another week's grace before having to clone myself - I can collect Little Fish without worrying about the bus. And it would be lovely to spend time with Little Fish doing things she likes to do, and which Mog finds difficult, except that what LF actually wants to do is play with Mog.

It's nice to be able to open and shut doors without apologising for causing a seizure. It's good to be able to sit and not think I should be going to bed, grabbing sleep in case she needs me in the night.

But you know what? It's too quiet. Mog might not be the gobby one, and her machines might be substantially quieter than those of her little sister, but I miss the little noises that tell me Mog's alive and all's well with her world. I miss the creak of her footplates as she shuffles her feet against them when she's got something to say. I miss seeing her out of the corner of my eye , watching half her face respond to something whilst the other half stays utterly impassive. I miss watching her grin, pause for a fit, then grin again. And I miss her huff of breath as she sets herself up to say yes.

I'm deeply thankful that I'm not as tired as I was last time she went. But now I'm awake enough to miss her. Will they think to uncurl her toes, and will they know to squeeze the big one gently when they do? Will they remember to wipe her eyes, and will they spot that wobbly tooth when they brush her teeth? I didn't specify which music she likes at bed time, will she be able to let them know? Will they read her?

Once again I'm blown away by the trust people placed in me, when I worked in a boarding school, and then when I did respite care. I never really appreciated what a huge undertaking it was to let others take over for a while. She'll be fine. I left her happy and excited. Things won't be done the way I'd do them, but they will be done, she will be safe, and on the whole I suspect people would prefer her to be happy and have fun than to be miserable and bored. Little Fish won't be missing any school, and I won't be tearing my hair out trying to be in two places at once. Whether or not Mog can sit in her chair, she'll spend time with the teacher at the hospice, she'll have physio and all the other bits and pieces she's missing out on by not managing to get to school.

But I'd still quite like to scoop her up and plonk her back in her bed here, back in the bedroom next door to mine, where I can hear her bang on her bed when she's fitting, and hear her quiet happy sighs when she isn't, and where I can watch her chest softly rise and fall as she settles into sweet sleep.



A Little Fish-ism from earlier.
"Mumma, Mum, Mummy, we 'ad a baby in our classroom today. Baby Max"
"Did you? Did you hold him?"
"No, 'e was Frankie's brother and 'e did be in our class today"
"Did you stroke him?"
"No! MUMMA! 'E is a Baby, not a Cat."

I'll consider myself told!
Tia

Sunday, 13 June 2010

And Little Fish Said...

"Hey, Move over, you're in my Learning Space!" as I sat down next to her on a friend's settee.
And then
"There did be a McDonald's on the A34, Mumma, we could go there on our way home. Or maybe on the A40." Who appointed you chief navigator and menu-master?
And
"But we must go home now now now because my cats are missing me." And "I wanno go hoooome!" and "Take me home, please, I need to be at home." And "I am a very tired girl now and I need to go home to my bed."
And, all the way home,
"Oh! Why we goin' 'home, Mumma, I wanna stay."

And I said
"Bed!"

Saturday, 12 June 2010

Mog's Mark of Mystery


The spots are from her CPAP. But the flush is purely random. Always that side of her face, always the same jagged edge at the bottom. It's not sun, not heat, not pressure. Any ideas?

Bad news, Good news.

No, Little Fish, we can't watch Mary Poppins and have a likkle something to eat.

Because we're going away for the weekend to see one of your favourite people ever!


Tia

Thursday, 10 June 2010

Thank you

I wasn't expecting this!
You know who you are.
And they're beautiful - and perfect timing too!
So,

Thank you

Wednesday, 9 June 2010

Anyone for cloning?

Mog attends our local special school. The hours are 8.40 - 3.10 daily; she leaves by bus at 8.30 and is dropped off first at the end of the day.

Little Fish attends our next-to-local primary school. It is the perfect school for her, and is about half a mile away. Its hours are 8.45 - 3.10, daily.

Anyone spot a problem there?

The mornings work just fine, most of the time, when Mog's not unwell or unable to sit in her wheelchair. The lie-flat chair will help with keeping her comfortable for both of those reasons as we do the morning dash,.

But I can't be at school collecting Little Fish and at home meeting Mog. Mog rides in a bus with seven other pupils, four of whom are wheelchair users. I'm not exactly sure how the driver manages to load eight children, clamp four wheelchairs down, and still manage to be here by 3.15 most days, but he does. Some days the bus is here at 3.10. And, sometimes there's the inevitable delay, a child needs the loo or doesn't want to get onto the bus or is throwing shoes at the driver, and so Mog doesn't land back here until a bit later.

I have to be here to meet Mog; she can't just sit on the doorstep waiting for us. And we have to keep Mog's transport time down to a minimum, as the escort staff don't give medication or do suction.

We live too close to Little Fish's school for transport to be provided automatically. There are no accessible buses going her way, and no company wants to do the job for the money they'd get for such a small run. We've advertised for parents walking our way who might be interested in letting her tag along with them for a small fee. We've approached local childminders. Little Fish's TA walked her home for a while, but had to stop as this meant she missed out on planning time and class staff meetings. As LF's key liaison, it's important she is at those meetings.

So, I've been collecting her early. Running home with her, racing Mog's bus back. And it's worked quite well. It's not ideal; she should not have to miss out on the end of her school day to meet her sister's needs, but it's meant she has been able to get home, have a few minutes to play before starting the whole tea and evening routine thing. It's not been perfect; when Mog's ill LF can stay on at school but then I have to drag a poorly Mog out again to collect her. And LF objects to having to the early departure from the place she loves so much. But it has more or less just about been workable.

It's also been understood this was a temporary solution. With the hope that transport would be available next year.

And now it appears that not only is transport not going to be available next year, but that it is no longer acceptable for LF to be missing school. And she must not be collected early any more. Which is understandable, except that I still can't be in two places at once, and if I could find someone else willing to do the walk, I'd already be using them.

So it seems we have two options, neither one really acceptable. Little Fish can hang around in the classroom and I can collect her late. This is a really kind offer from the staff who support her, and I do appreciate the thought. But it means she gets to watch everyone else leave and then wait. And if Mog's bus is on the slower side, it means she gets to wait and wait and wait. And I can see the support staff getting tired of that. It means we won't get home until later ourselves, which means she won't have time to play before needing food and her evening stuff. And it means that I will have to grab Mog from her bus and trundle her straight off to meet LF, not ideal if Mog gets off the bus in a bit of a state, not great for Mog if she's ill, and not wonderful if it's raining.

Or, we can try and get Little Fish into the afterschool club. Which is expensive. And we'd either be paying for a session we didn't fully use, or be picking her up even later than needed. Every single day. It's mainly for children of working parents, and priority is given to these children. So there probably aren't spaces anyway. And she'd still be late home, she'd still have her evening truncated, and Mog would still have to turn out to collect her.

It's a twelve minute walk with Little Fish, faster if you take her wheels out of gear and push, but that's like taking one of her classmates and shoving them in a buggy. How can it be this difficult to find a solution?

I'm thinking about finding one of these

which might shave precious minutes off the run. If I could be sure Little Fish were always the first out every day, if she could be released as soon as the others go to collect coats, if we could load her faster than we can into the bus, if I could know for sure Mog's bus wouldn't begin to be loaded until ten past, oh and if I could justify the £6000 asking price, that is.

But apart from that I think it's either TARDIS or cloning.

Tia

Monday, 7 June 2010

Waste

Disability is really not good for the environment. Public transport around here is actually pretty good - accessible buses from our doorstep into town, into Oxford, over to the hospital, every few minutes and all day long. Wonderful. Unless you happen to have two wheelchair users in the family. Same with trains; I guess disabled people aren't supposed to know other disabled people and spend time with each other. So, we drive most places. And, because we have two (sometimes three) wheelchair users in the family, we have a rather large bus instead of the small family car three of us could sit in if we didn't need the equipment. And it's mostly just me driving around in it. Not great for the environment.

With medical needs come inordinate amounts of packaging. Mog's feed comes in a tin; one tin lasts 2.2 days. So far, the Guides have absorbed a fair few of the tins; we've made them into drums, stilts, planted daffodils in them to give to old ladies. At home they're pencil tubs and money boxes, storage for the spare little fiddly things you get with flat pack furniture. But I'm running out of options; we've around a hundred spare at the moment, so if anyone wants some nice metal tins with plastic lids (think baby formula tin), please feel free. Bright yellow plastic scoop included as extra free gift.

We put the powder into a disposable plastic bottle; a new bottle each day now although at one point it was three bottles a day. Each bottle gets connected to a giving set. Each bottle and each giving set is wrapped in plastic, thirty of these are posted into a cardboard box, and mountains of wrongly sized ones are stacked on the shelves of my garage. Today I refused an incorrect order; I wanted half the order but did not want the bottles and giving sets we don't use any more. I was not allowed to accept half the order; it was all or nothing. So, I refused the whole lot and phoned the feed company. Who informed me that the boxes I had refused would now be destroyed. Brand new, sealed, boxes of giving sets and flexitainers, all individually sealed and wrapped, never been across my doorway just from their warehouse into a delivery van and back to the warehouse. And now they have to be destroyed because the box has had a sticker with my daughter's name on it and they couldn't possibly just remove the sticker and put someone else's on. They did however manage to catch the delivery man; apparently because they caught him before they got back to the warehouse they were in fact able to redeliver my order and now only half of it will be destroyed. But still - that's sixty pieces of sterile kit being incinerated for absolutely no good reason.

Meanwhile previous old supplies fester in our garage. And those we do use just add to the mass of waste we produce. Bottles into the recycling bin, but our recyclers refuse the giving sets and wrappers. And the cardboard box, together with the boxes from the catheters, and the boxes from the inco pads, etcetera etcetera and so on, pile up. I was taking a monthly trip to the tip, but on our last visit the men in yellow jackets informed me my bus was too heavy and I now need a commercial permit before I can visit again. So that's not happening. I took a few boxes to Tesco, only to be shouted at by a fellow recycler for having too much recycling and not leaving space for anyone else. And now they're taking over the garage, piling up, floor to ceiling and side to side, a rapidly impenetrable blockade preventing me from reaching more useful supplies. It's not disastrous, a couple of our carers are more than fashionably thin, so we just send them in. But there's a distinct possibility they might not make it out again.

And the waste keeps on piling up. Disposable everything, wrapped in disposable layer after layer, paper and plastic and cardboard and more plastic, and some days it feels as though the house is slowly drowning in a sea of wrappings. Plastic waves with packing peanut foam, Cardboard icebergs, drifting across the kitchen, ready to catch out the unwary.

And on a totally unrelated note, the other lesson I didn't need to learn yesterday was that sniffer dogs still prefer the scent of a cat to anything else they might be trained to sniff out. Unless they've been trained to sniff (and chase) cats, which seems a little odd.

Tia

Sunday, 6 June 2010

Lessons I didn't need to learn today

Four minutes into a tonic clonic seizure is not the time to discover the rescue meds have been left in playscheme. Sometimes being disorganised pays off however; having misplaced them once before I had an emergency back up bottle tucked into another bag somewhere in the corner of one of the rooms - and I found it before the five minutes was up. How so fast? Because I'd seen it there this morning when hunting for something else I'd also misplaced. Twelve minutes in total; a new record for Mog.

When mixing tube feeds and feeding cats, the correct order does not involve tucking the full feed jug under one arm and then bending over to drop cat food into bowls.

Just because a child is smart enough to figure out that "Meat Wedges" are burgers sliced into pieces, it does not necessarily follow they are sensible enough to be left within reach of a bowl full of dirty crockery.

A sign glued to Mog's footplates reading "Please leave my feet alone!" will do more harm than good, as people grab Mog's legs and move them to read the sign.

School tomorrow, and I say Bring It On!
Tia

Saturday, 5 June 2010

Rewind

I had a long, long complaint about yesterday which I never quite posted. And which I've just deleted. Some days are best forgotten. I think I'll sum it up as, eventually Little Fish has to grow out of the "terrible twos" doesn't she? And at five, it's surely well overdue.

There's a fair bit of not letting the sun go down on an angry day; somehow we reset ourselves for bedtime even on the worst of days. And today was a much better and brighter day.

Mog has new shoes. They might look like pink crocheted bathroom slippers to the rest of the world, but she thinks they're shoes and she's thrilled with them. And she's even happier that she can kick the right one off regularly. I'm somewhat less thrilled by that.

Little Fish voluntarily ate a teaspoon of broccoli and a dozen strawberries. I'm not myself convinced about dipping strawberries in ketchup, but there we go. I am however both impressed and infuriated by her ability to store that mouthful of broccoli, eat a plate of fish and a dozen strawberries, lick a cashew nut, and hold many conversations, and then finally spit it out in the bathtub a good hour later. This I could live without.

Mog was also interested in food for the second day in a row, and probably ate the equivalent of a whole strawberry spread out over the course of the afternoon. No choking, and I'll ignore the seizure as coincidence. Denial's a comfortable place to live sometimes.

Little Fish demonstrated her increasing fear of flies, which could make for an interesting summer.

Mog kicked Little Fish around the head as LF sat in the bathtub, thankfully soft pink slippers meant they both just giggled. And Little Fish washed my feet whilst soaking her blister in the bath; I could get used to that.

We visited the Italian Market in town and failed to buy anything Italian. We visited the shop which used to sell ballet shoes (thinking these might work as something soft which Mog couldn't easily kick off in the middle of the road), only to find it has become an amusement arcade thingy. We didn't visit that. We drank coffee in a cafe with my parents, we did a spot of Waitrose shopping, and Dad fixed my rear brake light, hurrah for Fathers!

A large police car blocked my driveway later on, calling on one of our neighbours. And was shortly followed by an emergency drain unblocking van. I'm still pondering the connection.

Little Fish was fiddling with a water damaged iPod; it sat in a bowl of rice for six months drying out but still didn't work or want to recharge. She plugged it in herself before we went out; when we came back it had suddenly managed to sort itself out again. So she's now the proud owner of an iPod touch and Mog can replace the Peppa Pig episodes on hers with more music instead.

Bedtime happened relatively smoothly; neither girl is now constipated and my washing machine is fully loaded. The sitting room floor is no longer covered in bath bubbles, pens, crayons, soggy bits of paper and confetti. There are capital As and capital Os graffittied on one of the tables but they look fixed to stay for the foreseeable future. The kitchen is not so tidy, but it can stay that way until it's a little cooler. The baby fish are growing and the tank is getting crowded.

And that's life in our house today. A mixed bag, but on balance good I think.
Tia

Thursday, 3 June 2010

Lazy days

There's something special about doing nothing very muchNot running around to other people's timetables, just enjoying life
and each other.
Tia

Wednesday, 2 June 2010

Today's parenting fail

Little Fish, eat your beans
No.
Eat your beans.
No!
Eat your beans because I am telling you to eat your beans.
No!
Eat your beans, you need to eat them to grow strong and healthy.
No!
Eat your beans, they are good for you.
No!
Eat your beans, they'll make you fart.
Really??????

Munch munch munch munch buuuuuurrrrp!

Tia

Tuesday, 1 June 2010

Top Tips

When dropping two girls at a playscheme and then immediately driving off to meet a friend, it is best to avoid forgetting to hand over medical supplies such as catheters.

It is also a good plan, when arranging a rendezvous, not to choose a place with no mobile phone signal.

Whilst preparing children for interesting activities is probably a good thing, it is always wise to check the planned treat is actually going ahead before telling them about it. Flat batteries on school buses will prevent outings.

A day out involving activites which cannot be undertaken with children in tow is likely to involve a lot of climbing stairs. Especially when the plan is "let's eat upstairs in an inaccessible cafe." Living in a flat and being used to taking lifts whilst pushing wheelchairs may mean you have not climbed any flights of stairs for a very long time. Steep staircases are not the place to discover vertigo.

Food, and friendship and one of my favourite places (which is, technically, accessible, but still not the most practical places to visit with a small child in a power chair. Or any small child really). Good times.
Tia

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