Early morning musings

Mog is not well. I don't think it's just the nappy rash, but she's got a high temp and she's miserable, needing to be held whenever she's awake. That's usually a sign that something's not quite right. As a baby, Mog needed to be held every moment of the day. Even being held, she would cry, but the cry wasn't quite as desperate as when she was put down. I remember big celebrations when, at 1, we were able to leave her in a special seat for a whole five minutes. Thankfully, she did eventually work out who she was, where she was, and a bit about how the world worked. Now, when she is ill, she reverts back to the little bundle of misery. Only she's a long stiff length of misery rather than a little bundle, and holding her all day is no longer a simple matter of popping her in a sling. I may dig out the biggest one though; see if I can create something out of it for her.

When she's like this, she loses the ability to sleep naturally. I try to hold off on her sedative until a reasonable time in the evening; it gives us both around 6 hours usually, so I like to leave it until I am ready to sleep as well as she is. But she was desperately miserable last night, so I switched her to sleep by half past seven. The relief on her face as she slid off into a deep sleep was wonderful - her seizures play up more when she is ill, and more when she is tired, so she will drift off to sleep only to be woken seconds later with a big jump and a twitch. Exhausting for her and she hates it.

So, an early night inevitably meant an early morning, and sure enough, she was awake again at 3. Awake and miserable - still feeling under the weather then. Painkillers, a clean nappy, more special cream on her sore bottom (which is, thankfully, beginning to look a little less nasty), a quiet CD and some comfort, and she slept for another three hours. Not just miserable but outraged at 6, different painkillers, her morning meds, a big long cuddle, another change and more cream, and she settled down in front of the television for some early morning puppet stuff. Her howls woke Little Fish; no time to get LF up whilst still trying to comfort Mog so I popped into her bedroom and turned her over, she pulled the duvet back up and settled down again. Grabbed my coffee and went in to see Mog who was blissfully asleep with a half smile on her face in front of the television. Little Fish had also settled back to sleep.

Now it's 8.30, I've had my second cup of coffee for the morning. I'm wide awake and both girls are still snoring gently, one at each end of the house leaving me in the middle walking on tiptoe to keep the noise down. It's unusual for Little Fish to be asleep still at this time in the morning, so I hope she hasn't got whatever Mog has. Mog will I hope sleep for another hour or so, and her mood on waking will let me know whether she's slept off whatever this lurgy is, or whether, after a trip to our own GP yesterday for bottom cream, we now need to be chasing an Out of Hours appointment for antibiotics. Little Fish has an appointment on Monday morning for some allergy related stuff anyway; it would be nice to have a couple of days at least without seeing the doctor!

As I was holding Mog a lot yesterday, Little Fish was inevitably left a little more to her own devices. She found my camera again (I think I need to find her a child's model; she keeps managing to change the settings on mine). Here's her photo diary of yesterday.
"Out Mummy, out dere"
Mummy and Mog - I quite like this photo; she's definitely improved since her first attempts.
And finally, her best self portrait yet.The girl has talent, I tell you! She's so happy to have the camera, holding it tight in her hand as she wheels herself around using her elbow, knowing which buttons to press to turn it on and to take photos, and learning how to keep her thumb off the lens. It keeps her happy and more or less out of trouble. Now, if she could only remember where she put those passports I'd be a very happy bunny myself.

Excuse me, I am off to make the most of the peace before the girls decide it really is time to start the day.
Tia

Of playmates and poo.

Nice day. Gentle day. Mog has a very painful nappy rash, so we're trying to keep her off her bottom as much as possible. Little Fish was loving the fact that this made her taller than Mog this morning. Out for the afternoon with friends. a garden centre with playground and lots of animals to look at. Or in Little Fish's case, lots of animals to hide from as the big scary evil monster ducks might get her. We stocked up on some rather nice perennials (I'm being brave here; I usually stick to one off annuals which I then kill rather faster than nature intended). Loaded all the children into the bus, squeezed all the plants in around them, and then drove around to the collection point. I stayed with the children as my friend went to pick up our manure.

"Manure?" asked the boy, "What's that?"
"Horse Poo", I replied elegantly. Eloquently? Succinctly, anyway.
Giggles from three of the four children in the back, and then a pause.
A small, worried voice, looking at the pots of plants and piles of other clutter necessities. "Will it come in a bag?"

It did.

Dropped the friends back home quickly, then unloaded the girls and what looked like half a botannical garden's worth of flora. It filled about half of one bed. The horse poo went a bit further around the garden, with Little Fish taking great pleasure in throwing it into the flowerbeds. Fling it here, fling it there, if you stand in the way then you'll all get your share.

Mog meanwhile spent the rest of the afternoon lounging around on her bath chair, kicking the grass and shouting at us. All the plants in, all the poo flung, I loaded Little Fish into a tub of bubbly water and we sat down to relax for a bit.

Took this photo and as I switched off the camera it started to rain. Little Fish was not impressed that I went to rescue Mog, pump, bathseat, books and even the garden tools before plucking her out of her bath. Extremely unconvinced with my explanation that she was wet anyway.

The plan was for an early night and an extremely early start tomorrow, but we then had a phonecall from the hospital cancelling Little Fish's scheduled surgery. So the PEG will stay in situ for another few weeks. We will not have any answers about her hips before her next big round of appointments, and will have to delay sorting out her wheelchair seating until they decide to give us another date. Her foot op can wait, the rest less so.

We'd planned a day in hospital and then a quiet weekend. School doesn't start again until Tuesday now. So how should we spend the rest of our holiday?
Tia

Quiet times.

Too quiet. And as anyone with a toddler knows, that is rarely good news.
Marvellous.
She's in bed now.
Tia

Happy happy joy joy

Oh happy day.My keys are here once again. Hazel and Martin arrived at lunchtime yesterday together with scrumptious baby. Very scrumptious even if he is as bald as a coot baby.
Pub lunch, chats and children, lazy afternoon. Martin kindly deconstructed my compost bin to hunt for the missing keys - no joy. Threw the children into a giant communal shower thing and then into bed, and ordered a takeaway. Hunting through the teetering tower of papers and post and other essentials filing system to track down the menus I was hit by a large metal object. One bunch of keys. Hurrah!

So, curry, keys, and good friends. Happy children in reasonable health. Does it get better than this?
Tia

Keys and bananas

Still no sign of the keys. We have visitors coming shortly, bringing their 8 month old baby. The highchair is in the garage. The garage key is missing. It's distinctly possible that the keys are in the garage, that I somehow accidently left them in the garage with the mower and then shut the padlock leaving them there. I can't check this, because I don't have the keys. No problem, I thought - I'll just saw off the padlock and replace it. Good plan. Except for one small flaw - the hacksaw is also in the garage.

Meanwhile fun and games last night. Small baby coming this morning, so naturally Little Fish decided to come up in a giant great rash yesterday. No temperature, just a scarlet chin (which has been sore for a few days now) and a rash down one arm. Not slapped cheek type rash though. We watched the rash creep from one arm to one arm and one leg, to the other arm and leg and then finally to her abdomen, all in the space of about 30 minutes. Exciting stuff! Little Fish has reactions to quite a few things - latex, plasters and dressings of various kinds mostly. But she'd not been on contact with any of them. The rash started up just ten minutes after eating a banana. And it turns out that bananas are related to latex, or have one of the latex allergens in them, or something like that. Who knew? Certainly not me. This is a pain. She's been eating bananas daily for a few weeks now, ever since we worked out that it was a nice portable piece of food which didn't need mashing. The NHS direct nurse and I brainstormed it, and the banana is the most likely culprit. A systemic reaction rather than her more usual contact reactions because she ate it rather than just touching it. Meanwhile rash growing ever pinker and more violent, and her arms started swelling too. Nice.

30 minutes after giving her some Piriton (not an easy thing to find on a bank holiday Sunday evening; thankfully just before we geared up for hospital I remembered where I'd stashed a supply after someone else in the family had an allergic reaction) the rash was gone completely, as was the scarlet chin. She's had the sore chin for a few days - this morning it looks chapped but no longer red and sore. So I'm thinking she's possibly been reacting to the bananas for a while but this was the first big reaction. Reading up on it it seems that avocado and kiwi are also linked to the latex fruit thingies - that's three nice soft biteable healthy things which I probably shouldn't be giving to Little Fish any more. Or at least not until she has had some proper allergy testing things. Meanwhile I must get hold of some piriton syrup; creating a small child sized dose from an adult tablet is not easy.

I wonder why it started on her left side first?

Tia

Wet Wet Wet

Someone, somewhere, is laughing at me. It takes five minutes to walk to church (ninety seconds to sprint home when the babysitter rings me in a panic, fifteen minutes when we follow toddler time, which gives priority to counting cars, spotting dogs, waving to leaves and watching woodlice rather than actually reaching a destination). Since it also takes five minutes to load the bus, and another five minutes to unload, plus about five minutes to back out of the driveway, drive to church, queue for the carpark and then find a spot big enough for the bus, we walk to church. No matter what the weather happens to be doing.

Torrential rain this morning. Having completely mislaid Little Fish's waterproofs, I wrapped her up in a blanket and a fleece and hoped for the best. After our five minute journey one very sulky (no time for toddler time this morning) child was unwrapped and found to be one very soggy sulky child.

We were only slightly damper than those in the congregation who had driven to church. Singing the correct lyrics to our first song was very difficult.
"OVER ALL THE EARTH,
You reign on high,
Every mountain stream,
Every sunset sky.
But my one request,
Lord, my only aim
Is that You’d reign in me again.

Lord, reign in me,
Reign in Your power;
Over all my dreams,
In my darkest hour.
You are the Lord of all I am,
So won’t You reign in me again."

That would be reign in, not rain on. Either God or the worship leader has a sense of humour. Possibly both. Home again, through slightly less driving rain but with the puddle hazards instead. We waited here for a few minutes until there were no more cars coming. Just as we got to the puddle in the picture above, a car came powering on through, and whilst I'll give it credit for not actually swerving towards us, it made no attempt whatsoever to avoid sending a tidal wave over us either. Little Fish's power chair is indeed waterproof. Always good to know. Mog was most entertained. I was not.

Arrive home and drip dry. Turn on the radio. "Raindrops keep falling on my head". Oh very witty.

On an unrelated note, where are my keys? I used them on Friday to get something from the garage. I haven't seen them since. We have spare car and front door keys, but my rather large and vast keyring has a collection of other people's front door keys, a RADAR toilet key, and my only garage key on it. You wouldn't think it was possible to lose a keyring holding a RADAR key; they're huge. Meanwhile until they turn up I can't get into the garage, which holds Mog's feed supplies. Nor can I put away the garden spade. The keyring itself is also rather special; it has a photograph of Goldie on it. I've retraced my steps and am forced to the conclusion that either Little Fish has squirrelled it away somewhere (fished it away?) or it has been piled into the compost bin. If LF has taken them I have no idea where she's put them; they don't appear to be anywhere in the house. And I don't think I can face searching through the compost bin right now. Anyone got a metal detector?

Tia

Sleeping in

I like Saturdays. They are our only official day when we don't have carers, our official opportunity to lie in. Of course this does depend on a certain degree of cooperation. Which was not forthcoming this morning; Mog woke at ten to five miserable and sore. Sorted her out and headed back to bed for a little before realising I hadn't in fact sorted her out at all. So gave up, sat up and snuggled with her for a bit until the painkillers kicked in and she finally dosed off again.


She slept quite well after that. And thankfully Little Fish did too - staying asleep as I crept around the house hovering over the kettle to stop it from clicking when it boiled, muffling the sound of running water with strategically placed rags, stirring coffee by agitating the cup rather than risk the clink of metal against china. All worth it; she slept in until 9 so I had a beautiful peaceful morning to myself. One day it'll be my turn to sleep in though...
Tia

It's yoyo time

One very very overtired and miserable Little Fish. A few choking episodes during the day including one bright blue one (pretty but not really to be recommended). Beyond coherence once we got to teatime, so I shot her into bed early, where she grabbed at her Nippy in relief and settled down.

At which point Mog decided it was her turn to start choking. Not blue but nicely purple and hypersalivating - and yet no apparent reason. Just too much dribble. So, early meds for Mog and scooted her into bed too.

Little Fish, revived by 30 minutes on the Nippy decided it was morning time and started shouting for "up again". Turned her over, found her a dry bit of sleeve to suck and settled her down.

Mog started crying. Vented her (took the air out of her stomach; she can't burp), she settled. Little Fish shouted. Turned her again, pulled her curtains even closer together, sat beside her talking her down into sleep until howls from Mog again. Gathered Mog up and helped her to vomit (through her gastrostomy, she can't actually puke any more), then settled her in the only place she found comfortable - snuggled up on my lap facing me. She's too long to do that really; her chin digs into my shoulder, her knees are on my knees and her bottom sticks up in the middle. But it works.

Some gentle patting and rocking and she settles, at which point Little Fish's Nippy shrieks a disconnection warning, which causes Little Fish to shriek in turn. It doesn't usually bother her, but sometimes when it has come loose she ends up desperately clutching it to her face; I think she's too tired to work out how to breathe for herself so she tries to do the work of the straps herself whilst shouting for help.

So Mog unceremoniously thrown back into bed, I leap for the Nippy and get Little Fish breathing comfortably again. Find the remaining dry inch of her sleeve for her to suck and slip out of her room. To find Mog choking on dribble - haven't we been here before?

Both Mog and Little Fish have runny noses which I guess doesn't help with the breathing/dribbling thing (in fact thinking about it, if Little Fish has a runny nose and is breathing through her mouth, how is her Nippy with its nasal mask doing anything at all? Hmmmm). Lightbulb moment; I head to the kitchen and retrieve the Olbas Oil. Two drops on Mog's nightie and her runny nose dries up, now she can breathe and suddenly the dribble isn't an issue any more. And it's only taken me four hours to figure it out. Sorry girls!

I'm off to bed before either of them find something else to fret about
Night
Tia

Parachutes and pink knickers

Rainbows tonight. Mog likes Rainbows, and the girls there are getting to know her. Tonight we played a version of Grandmother's footsteps, where one girl called out a letter of the alphabet, and the others took one step forwards if that letter appeared in their name (or two steps if it features twice. And so on). Very sweetly, one of the girls called out the letters in Mog's name, in order, so that Mog would win the game. And the others were happy for her to do so. Mog was very happy about this. I was rather impressed that a five year old could spell Mog's name - I guess there's a lot to be said for Jolly Phonics after all!

Next, parachute games. And the pink knickers? That's the Rainbow version of one of the games we play with the Guides too. Flap the parachute up and down, and call out something which may describe some of the girls. Anyone fitting that description runs under the parachute and swaps places with someone else. As an example - "anyone who is five", "anyone who has a brother". We use it with the Guides as a good way of learning about the girls; the Rainbows use it as a way of burning off excess energy!
Mog was most entertained to be whizzed under the 'chute with the rest of the Rainbows, and they were (mostly) good at not getting run over. Huge gappy toothed grins as she emerged at the far side of the parachute and a fight to turn her wheelchair round so she was angled right for the next run. Lots of laughter all round and some genuine surprise from some of the leaders; I don't think they'd seen her respond like this before and hadn't realised that underneath everything else Mog has going on there's a little five year old girl just like the other Rainbows.

Oh the pink knickers? That's the Rainbows' catch-all; if Rainbow Rabbit (main leader) calls out Pink Knickers then EVERYONE has to dive under the 'chute and swap places.

We were unfortunately a little late to Rainbows this evening. I had to pop into Budgens to buy coffee before we went (see here for what happens when I run out). As we rounded the aisle I was stopped by a chap in a loud Tshirt with an amber necklace and some disconcerting multi-coloured facial hair. He greeted me by name, knew Mog's name, and spent some time talking to me about my parents. I have absolutely no idea who he was.

The joy of living in a smallish town, the same smallish town I grew up in, is that I rarely never walk anywhere without someone saying hello and either asking after my parents or giving me complicated messages for them. The disadvantage of living in a smallish town, the same smallish town I grew up in, is that I rarely never walk anywhere without someone saying hello and either asking after my parents or giving me complicated messages for them. It doesn't help that I am dreadful at remembering names at the best of times, and there is a limit to the number of times you can say to someone "I'm so sorry, what was your name again?". In this case this person so clearly expected me to know exactly who he was that there was no way I could ask him without being very rude. Normally, I can recognise someone but just not place them - this chap, if I do know him, has changed so dramatically from the last time I saw him (which would have been when? Back at school? I have no idea) that if he'd not said hello I wouldn't have had a clue that we had ever met before. And now Mum and Dad are off on holiday and incommunicado for the next wee while; I will have to retain the description and hope they can work it out when I get home again. And in the meantime, hide if I see mystery man coming my way, so I don't have to have another of the "you know everything about me and I have no clue who you are but don't want you to realise this as it would be rude" conversations.

Tia

Names

I seem to collect girls with unusual names. Mog's isn't that unusual - I've known others with her name, but my other daughters have names which are unique to them. There are advantages and disadvantages to this. If I hear someone calling Little Fish's name, chances are, they're calling for Little Fish. This is a good thing. On the other hand, every time someone hears it for the first time, I have to spell it out, or explain that it's spelt like another, more common name, just missing a particular consonant. This gets old fast.

It's a strange thing, not having been involved in the choosing of my daughters' names. I know the story behind the names, and I know the meanings of the names, and the girls fit their names well. When I adopted LF I was able to give her a new middle name. I could, I suppose, have changed her name altogether, but her name suits her. And one day I'll get over the urge to tell the world that I didn't choose it, it isn't my fault!

There is power in a name. Did Mog's name make her the girl she is today, did she grow into who she is because she was given her name, would she have been different if she'd been a Jane or an Anne? Knowing her now, and knowing the story behind her name, I cannot imagine her being called anything else.

Little Fish's name means Faithful, Righteously Believe, Covenant. In the 13 months between hearing about her and bringing her home, I took this as a promise to me, a sign that she would be my daughter one day. Did her parents know the meaning of her name? I don't know - there is a story attached to how she came to have such an unusual name, but it is her story to share if she chooses to, so I'll not go into it here. Sorry.

And Goldie. Goldie's name means sunlight. Those who knew Goldie could describe her as tempestuous, sunny one minute and storms the next. Physically, a ray of sunshine is a pretty good description, especially when the light fell on her hair. And her sunny sunny smile when things were going well.

There is power in a name. Goldie's name is hidden these days, not mentioned, my invisible daughter. References to her are made in a hushed voice. Mentions of her absence, her death, are made in parentheses in official reports on the other girls, read out with averted gaze. My own accidental use of her name instead of one of the other girls' names is met not with laughter or even smirks as it would be if I merely transposed the names of Mog and Little Fish, but with shock and pity.

This isn't universal. I have friends and family who aren't afraid to let her name be spoken. Children especially are not tied to this strange convention which says the dead must disappear. True, I don't always want to have the same conversation over and over again, but her dying was really only one fairly minor part of her life. She was so much more than a tragic accident. And yet, if I mention that she would have enjoyed doing something we are doing, or talk about her favourite story, I am greeted with awkward looks. Whispered explanations are offered to people who don't know the situation.

I like Little Fish's take on this. I have photographs of all my girls displayed around the house. Goldie smiles down at me from hilltops, from swings, covered in chocolate cake, asleep and cuddling a baby. As with her name, some people find this hard, avoid looking at the photographs as if they are somehow unclean, contaminated. Others stop to examine them more closely. Mog likes to talk about her absent big sister - does she understand death? Or does she believe she's just moved away from home and has no time for us? I honestly don't know. But for Little Fish, it's all very simple "Dat Goldie. She die. Bu bye Goldie". She has no fear of using Goldie's name. I should like to shout Goldie's name from the rooftops, carve it into walls, wear it over my heart. If Goldie's name were less unusual I would be able to do so; she'd be safely anonymous, one among many. But the rarity of her name, an advantage when she was alive, now adds to the silence surrounding her.

And my own name? I like my name. It's neither particularly rare nor particularly common. In a secondary school with a thousand pupils, there was one other girl who shared my name (but spelt it wrongly differently). I can only assume though that my parents did not know the meanings of my names when they chose them for me - my first and last names together mean Bitter Martyr. I try not to live up to it!
Tia

Lending a hand

Not behind the child but between them.

Mog's hand, a tightly clenched fist, getting tighter the straighter her arm is pulled, nails digging into her palm unless her brace is worn most of the time. A hot little hand; it can't grasp toys or pens but can knock toys over and press buttons if they are in easy reach.

Little Fish's hand, baby pudgily soft and squidgy. Too soft; the thumb joint pops and dislocates and she too needs hand braces. A hand with the power to grasp a wheelchair tire and push down, whizzing herself around, and yet is just beginning to be delicate enough to pick and remove stringy bits from bananas and seeded bits from bread.

My hand, holding the girls' hands. Stopping Little Fish from tugging too hard on Mog's hand and causing her pain. Gently pulling on Mog's arm to stretch the elbow joint, gently manipulating Little Fish's hand to put the thumb back in its socket. A gentle hand, used for soothing troubled brows and brushing hair, patting backs and rubbing necks, giving meds and dressing children. And a tough hand; unscrewing bottle caps and chopping butternut squash and preventing small child from escaping through the front door, pushing herself into traffic, or generally destroying the house.

Busy hands, all. Even Mog's, which appears so stiff and useless - it has its uses. Flinging her arms wide, it can be used to knock radios off stools or bottles off tables. She has perfected the fisted wave; a very subtle movement of the forearm which in other children would be a frantic elbow dislocating frenzy, a gentle Mog Goodbye.

Too busy, Little Fish's; books are ripped and walls graffitti'd (no, she didn't do this painting, that's from our church carpark; her works are generally limited to biro squiggles. So far...), telephones dialed and cupboards emptied. Even now, asleep, her hands are busy - one gently rubbing her other forearm and seeking out dry patches on the sleeve of her pyjamas, the other partly being sucked through that same sleeve, and partly patting the nosepiece from her Nippy.

Six hands here and yet we need more. I hope our missing carers will turn up tomorrow.
Night
Tia

This Green and Pleasant Land

A lazy Sunday afternoon


We took the scenic route, my girls and I
Ignored the gleaming, blinding motorway
And took the lesser road; it called to me
A winding trail between the fields and sky.
We took the scenic route, my girls and I
Forsook the speed for slower paths today
Took time to pause, to notice and to see
This world around as as we drove on by.
We took the scenic route, my girls and I
Past Sunday village cricket on the green
With horses, barns and fields around each bend
And windows open to hear the ravens cry.
We took the scenic route, my girls and I
And took our time for each idyllic scene
From ancient houses, driving through World's End
We took the scenic route, my girls and I.

Graffitti

Broneirion

We're committed now. Broneirion here we come. Planning meeting today with the girls. Always good fun. Or hideous torment, depending on your own feelings about spending time with lots of 10-14 year old girls. We're taking 30 this year. Hmmm. I know I'm tired just thinking about it! Too tired to blog actually; or at least to blog with any degree of intelligence or hope of providing interest to the readers. So please feel free to click through and take a look at where we'll be heading, in just a few short weeks.

2 showers, 30 girls. And leaders. Ouch.
Cooking for 45 on wood fires - interesting, smelly, warm, strangely satisfying.
Juggling Guiding with Mog and Little Fish - always good fun.
Watching the Guides learn new skills, overcome fears, make friends, laugh at silly non-boy-related stuff - never loses its appeal.

That's the plan at least.
Tia

Rainbows last night for Mog - and a cookery competition. Divide the girls into two groups, assign a Young Leader to each group, and watch as the teams cook biscuits. Mog's team made chocolate chip cookies, the other team made chocolate shortbread. Mix, bake, then wave frantically in the air as the next group to have booked the church hall get fretful with the delay. Rainbows and leaders alike get to taste the biscuits and vote for their favourite. I liked the chocolate shortbread (I know, traitor to my daughter); Mog choked on that and did not choke on the chocolate chip from one of the cookies, so we assumed the chocolate chips won her vote.

One very tired happy little girl all snuggled down into bed and ready for sleep - one equally tired blogger about to follow her when she switched from happy and relaxed to cough splutter gasp wheeze sneeze CRY cough cough gasp bubble bubble. Reposition her and a semi smile, but more gasp bubble cough choke purple child. A spot of suction, and all is sweetness and light again. A peaceful night after that.

One busy morning, getting Mog up and out (a Mog with no signs of any further coughing or choking, very pleased with herself and ate her breakfast beautifully). Little Fish also awake in good time, feeding and wearing her breakfast in equal measures, and then into clothes and ready for the day.

Mog into her bus and the usual frets from Little Fish about the unfairness of being the youngest and not being able to go on the school bus every day. Instead I load her into our bus and head off for the opposite end of the county, to a coffee morning held for parents of medically complex children. I've attended a few events run by this particular charity, but this is the first coffee morning I've managed to make it to. Definitely worth it; this one was hosted by the charity's patron, who happens to live in one of the grand old country houses peppering our county.

As we drove past the gate keeper's cottage and through the deer park I couldn't help noticing a sign to the side of the drive. "Give way to aircraft". Scanning the skies I saw no helicopters or biplanes, and instead we arrived uneventfully at the back door, unloaded our distinctly scruffy van, and hunted for an entrance. Two peacocks posing as living statues scared Little Fish first, followed by a beautiful brown dog who attempted to investigate her gastrostomy. This last ensured that LF would stay glued to my side for the first half hour of the morning, but she did relent eventually and consent to receiving the cuddles and general adoration the world likes to bestow upon her. Oh, and a biscuit too of course.

Two nurses and a play therapist, and LF initially the only child for them to play with. One hand firmly wrapped around my finger to prevent my escape (she is a suspicious child; I wish she would learn to believe me when I tell her I'm not going anywhere or that I will be right back), she consented to make a Father's Day card with a fish on the front. LF has no father, so we now have the choice of sending it to Grandad (who will be delighted with it) or to her Great Grannie, who is owed a thank you card (and who would be equally delighted). I'll decide that in the morning, or possibly when I've worked out how many other Father's Day cards she'll be making in how many other different locations over the next few weeks. It's a confusing world for Little Fish - she has one Mummy and that's it, her playmates mostly have a Mummy and a Daddy, and her sister has TWO Mummies and a Daddy, and two extra sisters. For now this doesn't bother her, she takes a close look around and then tells the world that I am her Mummy and she is my baby. We'll deal with the rest of it later. One day.

Just as Little Fish is getting into her stride and working out how to include the entire circle of adults in her games I realise that it is time for us to go. A quick(ish) sprint across the county, we call in at home just long enough to collect water and a banana, then over to the girls' school for a meeting.

The meeting is due to take place between Mog's speech therapist, the specialist speech therapist for augmentative commications aids, Mog's teacher, and myself. I arrive at the classroom at 1PM, where the teacher informs me that she has only just been told about the meeting, and cannot make it. Frustrating, but not her fault. I am also told the meeting is not until 1.30. I change LF in the class bathroom, and then we head back up to reception at a leisurely pace, so that I can feed Little Fish before the meeting. Here I am greeted by a slightly frantic speech therapist, who has been waiting for us; the meeting started at 1.

We discuss problems with Mog's communication aid (the biggest problem being, no one seems to be able to use it with her, it isn't a priority, she is bored with it, and she is completely dependent on an adult helper having both hands free in order to support her accessing it. Not ideal) and come up with some hopefully workable solutions (switches on a headband and a wrist strap so that she can use them independently). Hopefully that'll be in place soon, and then she should be able to start making herself heard in more detail again.

The meeting is nearly over when a runner from the classroom joins us; can I come please as Mog is fitting badly. I run; she is. Together we watch her for a few minutes, and then I gather up the school's selection of emergency medication for her and bring her back to our meeting, thinking that possibly the class drumming session is not the best activity for her until she's finished her seizure run. It is at this point my telephone rings, reminding me that Mog's other family are visiting this afternoon. Excellent timing. We debate meeting in town but decide that they will come to us when they have finished shopping. On reflection this was a very sensible decision; they are shopping for shoes. I do not want to think about what might happen if I were to take Mog into a shoe shop and come out without a pair for her!

Having totally impressed the speech therapists with my professionalism -lateness, bringing another child and feeding them during the meeting, taking personal calls, choosing to talk whilst my child is fitting merrily* - I allow them to finish up the meeting and decide to bring Mog home with us now rather than risk getting home only to have to return to school or chase an ambulance to hospital.

We get home; Mog is instantly revived and giggling. Little Fish demands more dinner. We make some rather average blueberry muffins using our nice new Floridian (well, Walmartian but still acquired on holiday) cup cake holders. Very cool silicone with feet. I like. Little Fish likes too - I keep finding them all over the house where she has removed them from the door and added them to her collection of babies. Nice cases, less than wonderful muffins, but still perfectly edible. No recipe - they were of the "open box, pour into bowl, add egg and oil, stir, shovel into cases, bake" variety.

A bit of a breather all round and then Mog's other family arrived. Mog had chosen some bargain trousers for her sisters whilst we were away, so she had those on her lap together with a photo album. Her sisters in return had brought her a pot of super thick luxurious yoghurt - very very delicious and just the right consistency for both girls. An ideal present; nearly as good as a new pair of shoes, and she definitely doesn't need any more of them!

Three girls (Mog's sisters plus Little Fish) all sitting on the stool playing the piano together very gently and more or less tunefully; Mog listening intently and smiling as she recognised some of the tunes. Fun in the ball pool, a spring clean for the doll's house, and suddenly it's bedtime and time for them to go.

Two girls very tired and posted into bed. One mother enjoying the heady scent from theseand ready for bed herself. Tomorrow we get to spend the day with all the girls who are coming to Guide Camp in the summer, and hopefully persuade the parents that their precious darlings really do need to learn how to wash up without a dishwasher and to sleep without a nightlight before they get into the coach in a few week's time.

Night all,
Tia

*I'm not really heartless; Mog has hundreds of seizures every single day; if we stopped the world for every single one of them we'd never get anything done. Unless her breathing is compromised or she is unhappy, we let them run for 30 minutes before treating them. They usually last 27 minutes - this one was no exception.

The Pizza Diet

Here's one for my dial-up friends (not friends I make by dialing up numbers on the phone, that would be weird. Friends who don't have broadband). No photos, and only a small amount of text. A very small amount of text actually - just enough to ask one question.

Why, after weeks days of eating boring healthy balanced meals and watching my weight stay exactly the same, do I find that the morning after having eaten a rather large and delicious takeaway pizza, I have somehow shed 9lbs in the night?

Tia

A day in my life

Little Jenny Wren is inviting people to join her in posting "A day in my life" for today, Wednesday 15th May. So here's mine.

I had a good start to the day; I awoke to this:
which is always a nice start; it means neither girl has needed me in the pre-dawn hours. Little Fish did decide to let me know she was awake as I was getting up, but since that was 6.30 I think it was nearly reasonable.

Next stop the kitchen; coffee and feed the fish.Breakfast for both girls, tea for our morning carer, get Little Fish dressed as the carer gets Mog up, and make sure Mog has everything she needs for school.Milk, check. Meds, check. Home/school book, check. Lunch, check. Spare clothes, check I obviously didn't check properly; she came home in a spare school tshirt as I failed to put in an extra of her own. Oops.

Sort out our breakfast thingsAnd a pile of laundry
Then wave Mog off on the school busNormally at this point, the next step would be to walk Little Fish over to preschool. But today she had an appointment at the Dr's, so instead we loaded up our own bus and headed off into town. Posted a letter, payed a bill, and zipped up to the surgery, where we sat quietly for 30 minutes until it was our turn.

Little Fish does not have diabetes. Hurrah. Our Dr is going to push urology to do some proper investigations, and if that doesn't show anything, then the next step is to look at diabetes insipidus. But it's more likely to be a urological problem. Since we already know that she has urology problems, I'm thinking that's sort of good news.

Back in the bus and dropped Little Fish at preschool. Home in time for some of thisand a bit of a sit down, before walking back past thisto collect Little Fish from preschool.

We meandered home togetherAnd had lunch
before heading out into the garden and realising that whilst theseare very pretty, and so is thisI should probably be spending less time admiring them, and more time doing something about thisand maybe adding something to thisI grew carrots in this window box a couple of years ago, mixed up with strawberries. They both grew quite nicely, although the carrots were only an inch or so long. Tasty though. But, enough pondering, time to load Little Fish and I back into the van and head off to our local cottage hospitalto have Little Fish's eyes tested.

I am still mildly amused by the sign on the window at reception:So is it my name you want, or my "name"? (Hello, my "name" is Inigo Montoya, It just doesn't have the same ring)

Eye tests went fine - Little Fish's eyes are working better than they were last year, however her long sight has worsened. So her eyes are more functional but less effective; not entirely sure how that works. But the good news is her sticky eye is likely to be nothing more than a side effect from wearing the wrong strength glasses, and unlikely to be anything more sinister. We have a new prescription (after much screaming and sobbing from Little Fish - she'll let the nurse stab her finger for a blood sugar test in the morning but won't let the optician shine a light in her eye in the afternoon, strange child), and will go and choose some new glasses next time we are in town.

Home again, and time to do a spot of this:whilst meanwhile Little Fish takes a turn with the camera.I am quite fond of this one. I like my ceiling; it is so clean and tidy up there. There is an awful lot of wasted space on a ceiling; I sometimes wonder about somehow coating the ceilings in this house in velcro, and just tossing toys, junk, clutter children up there at the end of each day. Mog came back from school, and we spent the rest of the afternoon in our usual round of cooking, feeding, medicating, cleaning up, changing and posting children to bed.

Little Fish has settled after her now obligatory round of calling out, being comforted, calling again, being comforted and turned, calling again, being comforted and having the door adjusted so that it is neither open nor shut, calling again and being told she needs to go to sleep, and finally silence. Mog stayed up an extra hour, and kept me company as I ate my healthy and nutritious evening meal takeaway pizza. What? it had vegetables on it...

Now I can hear the gentle hum of Little Fish's Nippy, and Mog is snoring less gently in her room. My brother has just phoned for a chat, and informs me that the weeds in my flowerbed were are Creeping Buttercup, not Ground Elder. And that my new nephew is doing superbly, my niece is happy, and he and my sister in law are surviving nicely. All good to hear.

Uploading many photos and blogging this for you all; I am now about to say goodbye to my MSN friends for the night, and will see you all in the morning
Night
Tia

Roast Beef and Raspberries

No, it's not the latest Delia Smith (at least I hope it isn't), it's Little Fish's latest discovery. Both of them very acceptable apparently, but only by themselves with nothing else on the plate, and the raspberries must be two at a time or not at all. Fun times.

Still, it's progress at least. The other progress we've been having these past few days has not been so positive. There's the whole scoliosis thing. Then at her annual review it was strongly suggested that her learning disabilities do in fact put her into the "severe learning disabilities" bracket, not the "delayed, she'll catch up, won't ever be top of the class but will cope" bracket. There's the surgery she'll be having over our half term holiday. Tomorrow we have an appointment with our GP - our community nurse believes that she is reacting (i.e. allergic to) her PEG, and that this is the cause of the general manky stoma. Oh, and that the wee problems are quite possibly related to diabetes.

This afternoon Little Fish has been complaining about sticky eyes. Her eyes are quite often pink and scabby; her Nippy blows air into them all night long if it gets readjusted in the quest for a perfect thumbsuck. So I cleaned them up, not really looking at them just gently wiping them with a bit of gauze on autopilot. It was only after the 3rd or 4th "My eye Icky Mummy" that I took a proper look, and realised they weren't sticky as in crusty and gooey, but sticky as in the eyeball was stuck in one position and she was needing a gentle wipe (or was poking herself with a finger) in order to get the eyeball moving again. I'm not certain, but I'm pretty sure that's not normal behaviour for a straightforward squint caused by long sightedness?

The timing is good - tomorrow afternoon she already has an appointment with the eye doctor - but I could really live without additional issues for a few days please.

Meanwhile, when Little Fish isn't raiding the 'fridge for raspberries and roast beef, she's now taken to wheeling herself up in front of Mog, pulling Mog's foot and then complaining "Mummy, Mog kicking me". Happily they both find it hilarious.

Little Fish has made progress in other areas too. We've been working hard on her vocabulary. The school bus driver, Mick, is no longer worried about paternity suits. Instead, Little Fish now wheels herself off the bus, turns around and shouts "Bye Bye Michael, Bye bye Michael's bus, bye bye Michael" until he has driven off. He seems to find this just as embarrassing. Meanwhile the escort wants to know why Little Fish refuses to acknowledge her at all. I'm sure it's nothing personal.

Tia

Bright Sunshiney Day

Bob came back last week. He had to leave again; the weather was not good enough for him to finish the outdoor work, and apparently it wasn't worth coming back just to finish the inside bits and pieces. He's been waiting for a sunny day to fit our new gate.

It's been warm, sunny, balmy weather for the past week now. We've been in summer clothes and sun hats and I have been obeying my optician who tells me I have middle aged eyes (query: if my eyes continue to age before the rest of me, will they be able to retire early and what implications would that have for the rest of my life?), and wearing sunglasses. We've been eating outside every day, the air is buzzing all around with the sound of many lawnmowers, and the scent of many barbecues. And still there is no Bob - do you think this could possibly be the wrong kind of sun?

Little Fish and I have been digging in his absence; I have been digging up yet more ground alder and replacing it with somewhat nicer plants. She has been taking the exposed ground alder roots and carefully burying them in her own "gigging 'oles". I'm not convinced this is helpful.
Tia

Scenes from a stationary vehicle

I think we found nearly all the red lights between here and there (and back again).
We found level crossings for Mog and Little Fish to laugh at (the bumps in the road, not the concept!)
We found many many older English churches
And pretty towns.
More red lights, more churches


More churches - it's very considerate to place red lights near so many churches, plenty of time to admire them.And finally out of towns and into the countryside proper,

The kind of countryside where seven villages will have the same first word in their title, and differ only in the Saint's name following. As I drove through all seven villages repeatedly, desperately hunting for the correct saint I did at least get to appreciate the many fields full of rape.
Glorious, golden, oilseed rape. Beautiful. It smells of the honey my grandmother's bees used to make, and I hear my great grandmother praising its colour as we took her for a drive through the country. Nearly blind, she could see the yellow but was insistant it was daffodils. Whatever it was, it was pretty and it made her happy.

So it makes me happy when I see it. And happily, none of us suffer from hay fever.
I had planned to give you a picture of an ancient windmill as well as the more modern variety, but, most inconsiderately, the lights by the windmill were green and the traffic was all moving. Sorry folks.

Finally, after much pausing at crossroads, and successfully relocating the same crossroad signpost from all four directions, and after a frantic phonecall, we arrived at our friends' house.

And had time to smarten ourselves up ready for the main event.I was herding children during the main reason for our visit, and there were better photographers than I present, so Tina can give you the rest of the story here.

A peaceful, restful weekend; visiting friends, celebrating a Baptism, watching Mog and my Goddaughter renew their friendship
and watching Little Fish renew her friendship with "Ina" and "Boy"
Please excuse the quality of the last photo; I was hiding inside so Little Fish could enjoy her friends and not worry about needing to be on my lap.

A good time was had by all, and I hope we can repeat it very soon.
Tia