Friday 31 October 2008

Perfect Moments

The light outside is fading, it is cold and windy. Inside, the house has been made shiny and clean during our absence this morning. A Matt Redman CD playing. I sit on the settee, one small ginger cat purring quietly into my ear, and a small super-soft grey cat purring more loudly in my lap. Cuddled up beside me is one small child, snuggling in full of love and trust and sleepiness. Opposite me a taller girl singing along to the CD in her own fashion.

And it strikes me, this is perfect. I would not change a single thing. This, right here, right now, is the best place we could possibly be, and the best thing we could possibly be doing.

Life is good.

Thursday 30 October 2008

Good news

Today we were up at our Orthopaedic Hospital, to see Little Fish's spinal consultant. We got there on time, impressing the receptionists by turning up not just at the right time but also on the correct date. It's been a while since we managed that. And, a mere hour and a half later, we got to see the doctor.

Little Fish's scoliosis has not progressed at all in the past six months. In fact, May's Xray showed a 31 degree curve, today's showed a 26 degree curve. Her kyphosis looked worse but measured the same. They think it is not aggressive (although that may change), they hope to avoid surgery until she hits puberty (in May we were told she wouldn't be able to wait that long, it's better to wait until puberty if possible because once the rods are in, the back doesn't grow any more), and in the meantime, and in a complete turnaround from our last appointment, Little Fish is to be as active and as mobile as she possibly can be. The more moving around she does, the stronger her back muscles will become.

Good news for Little Fish - one less op to worry about for now, and no restrictions on mobility and independence.

Good news for me - I can let her use her manual wheelchair as much as she likes without worrying that she's damaging her back by doing so.

Good news for nursery - she can carry on using her manual chair there too, and transfer to other chairs as necessary.

Big thanks to our physiotherapist who gave up what would have been a day off to come to the appointment.

So, one condition we can stick firmly to the bottom of the list of concerns. Won't necessarily stay at the bottom forever, but I'll take good news for the next few months over bad any day. Now to figure out why both girls have been puking tonight, and why Little Fish has been choking on all her food today. It can't possibly because I told her paed yesterday that she had been doing really well, can it?


Wednesday 29 October 2008


In the park this afternoon, to a 4 year old boy "How are you?"
"I do not exist today". OK then.

Little Fish is worried that the cats will get bored and has decided they need stimulation.
Goway does not think much of this plan.
I have taken this much peelings to the compost bin.And stewed up this much apple for pureeOnly to discover this many apples waiting once more to be choppedAnd this many still to fall.
My freezer is full, my fingers are sore and the girls are rebelling against daily applesauce.

Meanwhile, Goway is beginning to play again. He is fascinated with the cord from my dressing gown, and likes to tug and tug at it. This is entertaining in the evening, but embarrassing when our carers come in the mornings, and downright disconcerting when the postman is at the door. Perhaps I should get dressed occasionally. To prove that I do, at times, wear clothing and abandon my dressing gown, I thought I'd share this picture.
Goway pulled and tugged and pulled and tugged the cord the other day, until suddenly the whole dressing gown came to visit him. At which point he leapt two foot into the air, did an impressive double back flip, and bolted. It hasn't stopped him trying again and again to kill this thing.

I call the above pic "I fought the cord, and the cord won".

Little Fish is branching out into moving pictures. Excuse the mess. You'll need your sound up to appreciate it properly.

And there you have it, odds and ends from a fairly bitty day.

Tuesday 28 October 2008


Today Little Fish had an appointment with her neurosurgeon. We arrived at the hospital and squeaked into out patients just a couple of minutes before she was due to be seen. To be greeted with a big notice informing us of a 45 minute delay. Joy.

Sitting in the waiting room, we met the gastroenterology liaison nurse, who heard my concerns about LF's gastrostomy site and suggested a different course of treatment, one we've not tried before - she thinks the problem could be fungal. Has to be worth trying.

We then found the respiratory liaison nurse, who was able to give us a new bonnet for LF's Nippy ventilator. Very useful, as she vomited all over the old one last night, and it fell apart when I tried to wash it. Ooops.

As she dropped a shiny new bonnet into my hands, the neurosurgeon called our names, and, armed with LF's 18 inch high stack of notes, he staggered ahead of us showed us to his office. A good-ish appointment; he is concerned that the scoliosis may be related to the Chiari Malformation as well as to the dislocated hip and general paraplegia. He says it is inevitable that she will be in pain from her spina bifida (it had honestly never occurred to me that this would be painful before) as well as her scoliosis, sitting upright in her wheelchair, and a whole heap of other things. We'll be looking at regular pain medicines again then. He doesn't want to operate which is excellent news, he thinks her hand function is marvellous and much better than he had predicted given her various diagnoses, and he wants to see us in a year.

We then left and caught the lift downstairs to our bus. Walking past the WRVS shop, we bumped into the girls' paediatrician, who did a quick informal review of all their care. That's another phonecall saved.

And once in the bus, the phone rang, neurology registrar phoning to check up on Mog after her recent drugs tweak. We now have an appointment with Mog's neuro set up for next month.

There are advantages to becoming well known by the hospital staff!

Monday 27 October 2008

Harcourt Arboretum

It's been a busy few days, lots of preparation, one lovely but busily-peopled day yesterday, and lots of things needing to be done. Today the only thing we needed to do was get some fresh air ourselves, and tire small Minnow's legs out a little so she would be happy on her 'plane back home this evening.

So we came to our favourite Arboretum to do both.

And then came home all ready to sit and be quiet for a bit.
A beautiful day.

Sunday 26 October 2008

Easy Eggless Chocolate Mousse

Congratulations to the anonymous one who guessed a Christening. Not a Christening, but a Thanksgiving for both girls. Similar to a Baptism but thanking God for the girls' lives, and promising to do my best by them. I can't promise to bring my children up to be Christians, I can only promise to bring them up knowing God - the rest is up to them. Oh, plus, both girls were Baptised as infants before they came to our family. So we stood up in front of the church, I promised to to my best for the girls, and my friends, family and the congregation promised to help me do so. Nice.

No photos from the day as I didn't take any. I know others did, so if anyone has a nice one they wouldn't mind sharing I'd be very happy to steal it and impress people with my photo skills post it with full credit to you.

In the meantime, and in the interests of sharing a part of the day at least, here's the recipe for that chocolate mousse.

Take 1lb 12 oz plain chocolate, break it up into a pan and melt it over a very low heat, stirring at times. Remove from heat once melted.

Meanwhile, take 2 (UK*) pints of double cream, stir in 6 heaping spoons of icing sugar, and whisk until thick.

Pour the melted chocolate into the cream mixture and stir until all combined. Add any flavourings you fancy here - Cointreau goes down well, so does rum or even a bit of strong coffee or orange juice. Raisins and nuts will give you a mousse version of a Cadbury's Fruit and Nut bar, nougat, honey and almonds will give you a Toblerone. Or of course you can simply add Maltesers or small bits of chopped chocolate.

Shovel it into a large bowl. Grate some chocolate onto the top and refridgerate until chilled.

The original recipe was 150mls double cream, 100g plain chocolate, and 25g sugar. If you don't need to feed multitudes, you might want to start with that. There wasn't any left of ours though.

I wasn't sure whether I needed single or double cream, so I bought both on the theory the other would go down nicely with the apple pies. Now I have 2 pints of single cream with a best before date of I think Tuesday. Anyone got any suggestions for things to do with 2 pints of single cream?

*note to US readers - 1 pint = 20 floz giving us the rhyme "A pint of pure water weighs a pound and a quarter". This makes me smile when I hear the transatlantic equivalent "A pint weighs a pound the world around" - not in our part of the world it doesn't!

Saturday 25 October 2008

More family, more food.

What do the biscuits we baked yesterday, the cake we decorated yesterday, this giant salmon, and a wide variety of different salads have in common?

Why are the families gathering?And is this really the cutest baby ever?Oh, and why does the making of (and testing of) thisautomatically lead to this?

And, as a side note, why are all my photos tiny today?

Tune in tomorrow for an exciting explanation for all of this except the photo one, all suggestions gratefully received!.


Friday 24 October 2008

Too much life to blog

Sorry about that. Lots I can't share, lots which would be tedious to share (Mog continues to wail on for several hours most evenings, and is waking at around 2 AM most nights then wants to be up for the day from 5, Comeback feels the need to get vocal at around 3 most mornings, and I am tired. Told you it was boring). And some nice things too.

Thanks to Mog's early start (and her handy ability to fall asleep again by 8AM for an hour or two, nice for her but too late for me), Little Fish and I took some of this:All stirred and sneezed on personally by Little Fish, I just had to measure the ingredients and answer the inevitable whys.

So we took the above gloop, and turned it into these:which we put into the oven until they looked like this:You'll notice Little Fish checking the recipe book; she and I both want to know how we took a recipe for 12 cookies, doubled it, and came out with 66 of the things. Can only assume that these things happen for a reason, and that if we eat 42 of them no one will be any the wiser.

We then took a very large sponge cake I baked earlier this week, and covered it with hot sticky blackberry jam. More whys from Little Fish. And then we covered it with icing, until it looked like this:Jane Asher, eat your heart out.

OK so it isn't perfect, and in fact the cake underneath it broke in several places when I took it out of the grill pan cake tin, but I'm sure it'll taste ok.

Then the family descended and we went to the park. And then we came home, where Little Fish and cousin Minnow decorated the cake for us.
It took them at least an hour, during which time we adults got to sit back and drink coffee, always a bonus.

Minnow informed me that I should introduce her baby brother, pictured here in the parkand here in our ball pool.She tells me that he needs a blog name, and that this name should be Tadpole. So please welcome Tadpole to our blog. Here he is being very advanced for his age and counting up the number of balls in the pool.

And here is the cake, as decorated by the girlsclick on the photo for a supersized image, if you wish to see it in all its glory. The big brown shapes are clouds and cows, the small brown shapes are apparently snowballs. The wobbles at the edges are where little fingers have attempted to munch on the icing.

Now Mog has begun her nightly wails in earnest and I must go and sort her.

Wednesday 22 October 2008

Fits and Starts

My one minute workout on Monday night got me thinking. I'm not convinced that's always a good thing. But, for what it's worth, here are my thoughts.

Parents, too busy caring to get to the gym? Children, have you overheard people telling your parents what a burden you must be and how you take, take, take, without giving back?

I have the answer. A fitness programme for parents, where the child gets to be the coach. It's the Special Parent Olympics.

Some suggested routines.

The hurdle.

Child, position yourself in line of sight, but preferable separated from your parent by a stack of dirty washing, a puddle of spilt milk, assorted furniture and a small pet. Turn blue.

For added variety, return to your usual colour as your parent reaches you, and smile sweetly. Allow your mother to return to to her previous position, then choke. Repeat as necessary; seizures, spasms, screams, and trapping your head between wheelchair and headrest will serve to prevent boredom.

Long Jump.

Child, aim a projectile vomit so that it lands in a giant puddle separating you from your parent. Then choke. For a bonus point, ensure your mother's slippers are your side of the puddle.

High Jump.

Child, aim your projectile vomit upwards (a good thorough vent/decompression via gastrostomy tube will serve this purpose too) and ensure it is sticky enough to stain the ceiling.


It is best to be outside for this one. Wait until your mother has temporarily let go of the handles of your wheelchair, then jump to get the chair rolling again. Shout just seconds before you are due to hit the hedge at the bottom of the path.

Alternatively, ensure your parent is out of sight, then make a variety of suspicious noises.


So many possibilities. Losing the ability to self-wind, ensuring that the parent must lift you to their shoulder and jiggle repeatedly is a good start.

Break the hoist, or, if you can, roll out of reach of the ceiling track.

Slide down in bed, wrapping yourself around the duvet and under the mattress to ensure the parent gets a good stretch in place whilst trying to disentangle you, lifting you and mattress at the same time. If you can kick your sleeping system onto the floor this will ensure the parent gets a good chance of lifting at a lower level too.

If you have a power chair, arranging for this to cut out in the middle of the road just as the little green man disappears can be quite effective too.

Resistance training.

Active participation in your physiotherapy programme will help your parents with this. Push back as they attempt to manipulate your limbs, the occasional spasm mid-stretch will help with their reaction times too.

Dressing and intimate personal care are other particularly effective times to enable your parents to work on this. Cross your legs at the knees and stay clenched, no matter what. This will work their hands, wrists, arms, shoulders and back. Point toes at all times, unless parents are attempting to put your socks on, in which case a bend and wiggle is most effective. Keeping your fists clenched will facilitate their thumb workouts. Remember at all times to relax the limb not being actively worked on, save your own strength to put into the arm currently being pushed into a sleeve or leg into trousers. Throwing an arm out and to the side will give you good leverage to push back when your parents attempt to roll you over - this again will give them a good arm and back workout.

Speed and reaction training.

Develop a 2 second warning routine before any sneeze, vomit, choke or bowel movement. This will ensure your parents come running but will also mostly ensure that they have the ability to work on their resistance training as outlined in the previous paragraph too. The timing is crucial; no warning, and they will avoid the speed training, instead pausing to gather clean up tools before approaching you. Too much warning and they will instead avoid the resistance training follow up.


This is easier if you can team up with a sibling. Position yourselves in different rooms, then one of you needs to have a seizure, whilst the other needs to dislodge their ventilator. Standard variations (seizures, spasms, vomits, smearing) allowed.

For a cross country relay, ensure that your professionals schedule appointments at consecutive times but at opposite ends of the same hospital. Some children have attempted to manage this with separate hospitals, but have found parents avoid the exercise and instead drive from one to the next.

An in-patient variation of the relay may be acheived by releasing your parent to go to the canteen. Time your next medical emergency for the moment your parent reaches the tills to pay for their food. Timing is crucial - too late and the parent will return with food in hand, too soon and the parent will simply abandon the idea of food. The perfect timing includes a panicked phonecall from the ward at the very moment the parent is paying for the food. With practice, this should ensure the parent abandons their handbag and purse at the till, thus requiring them to run back to the canteen once they have run back to the ward to discover that your crisis was not life-threatening.


Have yourself admitted to a hospital which prevents parents from eating or drinking on the ward, and then remain too unwell for the parents to leave your bedside. For variety, see suggestions for relay above.

As an outpatient, your best time for this workout is at night. Wait quietly until you hear your parent turn out their bedside light. Cry loudly and inconsolably. Resist sleep until you have been rocked and patted and sung to for at least an hour. Close your eyes eventually and if you can manage to relax all your body tone so your parent is forced to hold you tight against their body and waddle back to the bedroom, so much the better. Keep those eyes closed as the parent puts you into bed, turns off the light, and stumbles back into their own bed. Allow the parent two minutes and forty two seconds of rest, before crying loudly and inconsolably again. NB this may be combined with the relay, if your sibling is cooperative.

It's best to combine this with being too ill for school or your parent may not benefit from the full 24 hour experience.


Require suctioning and venting simultaneously.
Kick out to dislodge your feed pump whilst having a nose bleed.
Lose all head control during each and every manual transfer.
Insist on your parent holding you at all times, especially when trying to talk on the telephone and have a drink.
Collude with siblings or cats to ensure your parent always has more than one living object to hold.
When out and about, refuse to push your own wheelchair, forcing your parent to push two wheelchairs at once. For added variety, insist on bringing your own doll's pram and then stop pushing that halfway home.
Arrange for one handlebar to collapse repeatedly at unexpected intervals. This is especially effective when being bumped up or down kerbs or past parked cars.
Tell all your friends to invite you to visit, but omit to inform your parents that they live in a 2nd floor flat with no lift.
Get into the swimming pool, then bribe the lifeguard or snotty child playing next to you to break the hoist.


Monday 20 October 2008

I'm just saying...

If you cook stuffed marrows on a Thursday, before Rainbows, and then leave them in the oven to keep them away from the cats, it is possibly better to remember that you have done so on Thursday evening, not when you open the oven again on Monday. I did wonder where the flies were coming from - but thought they were just after the cat food.

On a similar note, if you pick the windfall apples to stew, it is better to cut out the bad bits and discard more or less immediately. Leaving them in a jug for two days provides another breeding ground for the flies.

On a completely different note, if you are at Guides when the babysitter rings to let you know your daughter is entering minute six of a tonic clonic seizure, the one minute dash back home again quite possibly provides a similar cardio-vascular workout to a full session at the gym.

I'm just saying...

oh - and Mog is fine now, had more or less stopped by the time I got home and is sleeping off the rescue meds nicely.

Sunday 19 October 2008

Feeling philosophical

Little Fish has taken to insisting that I "Wake up, Mummy" Apparently I am asleep and dreaming her existence. Which leads me to wonder whether, if I am dreaming this, is this better or worse than the reality? And do dreams really come with this level of smellovision (noises off: "wake up, Mummy, I did a poo")?

I had to write a letter today, a letter to people I've never met, talking about a child they don't know, and presenting a potted history of the past twelve months. Trying to find a balance between concentrating on the negatives and showing a miserable existence, and between ignoring them altogether and presenting a perfect fantasy life. Information about our family life but focused on one child, ignoring the others completely, yet not presenting one child in isolation. Choosing five photographs from the 500 possibles. A year in review, editing out funerals and family weddings, focussing in on the minutiae of daily life but only a small proportion of it. Editing without lying, being real without being too personal, but remembering that these people have a right to the most intimate of information.

It's been an interesting exercise. How do you boil down a year into a handful of pages of A4? This blog doesn't contain half of what happens in our lives; trying to concentrate that further, producing "essence of our life". I'm glad I only have to do it once a year.

And now I must go and make ourselves smart. Little Fish has been invited to a birthday party, and my presence has been requested. It's a disco party for 3-6 year olds. Pray for us!


Friday 17 October 2008

Google Roundup

Had a lovely day today. A beautiful day, photos would have been wonderful - just the right golden glow to the sunlight and a fantastic location too. Unfortunately I don't know our hostess well enough to ask her if she'd mind us taking a few pictures. I could paint some word pictures instead - but, I'm tired, and Mog's fretting. So instead I thought I'd cheat give you the stars of this month's google searches.

shouting at a child to go to sleep. Doesn't work, trust me. Probably won't scar the child for life I hope, but it's really not terribly effective.

Child in washing machine. Oh don't tempt me (see above).

milkman came. The fastest milkman in the west, or just a regular milkman? Ours came this afternoon to collect the money if that's any help, he drops the milk off three mornings a week and then the slugs drink it.

my newly pierced ear is leaking pus. That's nice for you dear. I suggest you wash it.

battery operated plastic reindeer snow globes. If you find it, keep it to yourself. I don't ever want to meet one! And why are you hunting for one in October anyway?

what are hoists for special kids? They're handy creations which take the lifting out of the caring. If you asked this from the US then you might be better off Googling Hoyer Lifts, that seems to be the standard option amongst my US friends. If you're coming from the UK then ask your occupational therapist.

My cat won't take worming tablets is there anything else I can give her? No idea. But a handy tip from a friend - crush the tablet or open up the capsule, mix it with Marmite, and dab it on the cat's paw. The cat will wash the Marmite off and in doing so will eat the pill.

life cycle of toblerone. They grow on Toblerone trees. The littlest ones are havested first, older ones are harvested later on in the year. The little Tobler Ones things are the collected in Autumn; the seasonal change causes them to drop off the branches. Finally the branches are pruned and wrapped to be sold as giant bars just before Christmas. Then they make their way into my kitchen, where they become Toblerone Brownies. Assuming they aren't eaten plain, that is. I can't answer questions about the fruit and nut variety - that is an abomination and should not be mentioned. Ditto the white chocolate variety. The remainder of the individual little triangles should be planted outside in January, preferably at midnight when the moon is waxing. They will, given love and attention, eventually grow into the trees from which next year's harvest may be gathered. *


*I may not be telling the truth, the whole truth, and nothing but the truth here.

Thursday 16 October 2008

And so it goes on

A reasonably good day today. I like Thursdays; in theory I have five whole hours to myself in the middle of the day, as Little Fish stays all day in preschool. This sets me up for Fridays when Little Fish is here all day and then the weekend when we're all here.

That's the theory. In practice, minor little things seem to keep happening on Thursdays. LF gets booked for surgery, Mog gets ill, we have day trips with school, Mog gets ill again, and so on. Today was looking good until last night, when my presence was strongly requested at a meeting in the middle. Who needs sleep anyway?

Meeting was successful, annoying but mostly successful. Here's a question though - who is right, me or the therapists? When you measure a child for seat length, in order to fit them for a different chair because the wonderful chair they sit in in nursery has broken and no one knows who is responsible for paying the repair bill, when that child has a leg length discrepancy, do you measure the shortest or the longest leg to work out how long the seat needs to be? I would rather hear your answers before I tell you which was me and which the therapist. Oh - and anyone know who is responsible for repairs to chairs which were liberated from one store cupboard belonging to one particular department, for use by a child from another department, a child who is too young to belong to school and too much in school to access early years funding? So far the only answer seems to be "well it isn't us".

LF coped very well with my midday visit and was fine with me going again so that's good. For once I had remembered it was school photograph day, so had brushed her hair had put her hair up in bunches and generally polished her up a bit. She does polish up nicely.

Fast forwards through a peaceful afternoon (much appreciated peaceful afternoon) and on into early evening. We made stuffed marrows for tea - very nice although they refused to bake in time to be eaten before Rainbows. Took Mog to Rainbows, she showed off her new shoes and cried when the others were eating party food. Not entirely sure why - she could have tasted it if she'd wanted to.

Came home to a very tired Little Fish refusing to go to bed for Grannie. One tired Mog squawking, one tired LF protesting. One hassled carer trying to shower Mog, one hassled mother trying to keep both girls from mounting hysteria, and suddenly one Mini Button sitting on the floor and a nice neat hole in Mog's tummy. Wonderful. Balloon still fully inflated, so somehow it got caught up and pulled out without any of us noticing.

Clean hands, new sterile button, one Mog now sore everywhere and well beyond angry. Evening meds are in and sorted, LF in bed and hysterical, both because she's worried about Mog and because she wants me to stay with her until she is asleep; not going to happen whilst Mog is twisting herself into a tight angry knot. Carer leaves, and not until she has reached her car do I realise she has left early, leaving me with two hysterical girls in two separate bedrooms.

LF deeply sad but can wait a minute - if she's able to argue with me and scream that "I wanting Mummy IN ERE NOW" then she's rational and coherent, unlike the purple pretzel of fury previously known as Mog. I stand between both rooms for a minute and contemplate running out of the front door and up into the hills. We don't live near any hills, but I'm sure I'd find some somewhere and then head for the drugs cabinet. I can't solve misery with drugs but Mog's extended spasm I can fix. I draw up a dose of diazepam, and return to her bedroom, where I am greeted with a deafening silence. As I watch her spasm subsides, her body relaxes and she falls into a deep and lasting sleep.

Closing her bed quietly I tiptoe into LF's room, where the only sound is the huff and hiss of her Nippy. Not quite asleep, she waves her fingertips at me and I watch as her own eyes gently close, and her lungs rise and fall in an evenly measured 20 breaths per minute. Watching her ventilated breaths is surprisingly relaxing; each one perfectly timed and controlled to inflate her lungs just exactly the right amount. It's lovely to see her colour change and her whole upper body relax and gently rise and fall.

From raging hysterical monstrosities to sweetly sleeping angels in a matter of minutes.

Of course, as I write this up. Mog's hand has begun to bang against the side of her bed in a certain rhythmical fashion which means only one thing - she's having a seizure again. Counting the minutes until intervention time - where did I put that diazepam?

perhaps I should just take it myself

Wednesday 15 October 2008

After yesterday, I was slightly hoping for a bit of a quieter day today.


Up early early to be ready for our carer. Mog woke twitchily, but very loud and happy. We like loud and happy.

Little Fish woke as our carer left, grumpy and grouchy and a little achey too. Complained about my cold hands as I moved her legs around, she's definitely feeling more there which is odd but good.

Off to preschool, dropped her off and then a quick Budgen's run for more cat food. Nothing appetising in their super-reduced section, I am not sure if this is a good thing or not. Did manage to talk to my upstairs neighbour (first time in a couple of years or so!) who explained a bit more about what is not happening in the attic. Sounds not necessarily as serious as it was supposed to be, so I hope that's right and the building isn't about to fall apart on us.

Came home and sat here for a bit before racing off to collect Little Fish once more. Then had a phonecall from school, Mog fitting. Not enough to want to give her emergency meds, but too much to concentrate in class, and not a seizure type they'd seen at school before. So Little Fish and I went to pick her up, then had a quick lunch before heading up to the orthopaedic hospital to collect LF's new splints.

New splints. Little Fish likes the tractors and lorries, and was keen to show the orthotist how she could do the straps up herself. And undo them. And chew the velcro. Marvellous.

Post - another letter about a missed appointment. A report from one of LF's therapists which appears to be about a totally different child. A letter about the appointment we had just attended.

On into town quickly to choose frames for Mog's new glasses, and to find winter shoes for both girls. Mog manages to choose a fine pair of boots in between seizures, and Little Fish decides to pair her tractor and lorry themed splints with a pair of pink polka dotted trainers. It's an interesting combination.

We then want to visit a shop 100 yards away from the shoe shop. Little Fish is in her powerchair, so we can't bump up and down kerbs, we have to find ramps. This entails heading 100 yards in the wrong direction, crossing the road even further in the wrong direction, walking directly away from both shops to cross a different road. We then walk down the hill, past the shop we are trying to get to, to find a third crossing, and finally manage to walk back up the hill and enter the shop. Which then doesn't have the things we needed anyway. To get back to our car, rather than repeat the insanely long detour we try a different detour; this takes us up three different roads, one of which is blocked to wheelchairs by a large lorry and a big red dustbin. Great.

Finally back at our car, we face the ever pleasing realisation that someone has parked illegally on the double yellow lines behind our van. This would be annoying if it had been someone with a disabled parking permit, it is infuriating though when it is someone without one, just a very fancy car which is apparently too important to be parked in the carpark around the corner. They have left no space for us to get our ramps down.

Mog thinks this is funny, and is giggling lots. Little Fish is shouting "silly car, silly car, I not get my wheelchair in my bus". Eventually I manage to inch the bus forwards far enough to get the ramps out, a procedure which involves me leaving both girls on the pavement and me in the car. This renders Little Fish hysterical; she thinks I am driving off and have abandoned them both. We load up and drive home.

Phone calls from a therapist who wishes to see Little Fish at preschool tomorrow, and who feels it is important that I attend the appointment too. Ordinarily I would but I was counting on having a bit of breathing space. Hey ho. Phone call from the therapist who wrote the report I was unhappy about. Lots of upset, an explanation, and a bit of a plan to go forwards. I'm still not convinced though that it is considered normal for a three year old to have speech which is unintelligable to people who do not know the child well. But we do have a bit of a plan for the rest of it.

It's been a ridiculously upsetting phonecall - I really shouldn't have to explain why I get upset that my daughter can't eat, and that very little is being done to teach her how to eat. Because I am getting upset, I leave the girls in the kitchen and come through to the sitting room to finish the call. This proves to be a mistake; I re-enter the kitchen to discover that Little Fish has poured pureed macaroni cheese, cranberry juice and water all over the table, the floor, and her new splints and boots. Lovely.

So, an emergency cup of coffee, and then kitchen rescued, girls fed, various intimate personal care tasks performed, and two girls head to bed both at least a pound lighter than they were before I started getting them ready. Cats fed, emails sent, suction pump scrubbed. It is at this point in the day when I look down and realise my tshirt is inside out. And has been since I got dressed in the dark this morning. I could possibly have gotten away with it if it had been a plain one, but I had decided to go for the semi smart option (if tshirts can ever be considered smart), and found one with a nice patch of embroidery across the front.

Oh, and the zip on my jeans is broken.

I am off to find something silly to watch with a bowl of popcorn. Someone send me some chocolate.

Tuesday 14 October 2008

A Day in my Life

It's the 14th again, and Little Jenny Wren is hosting A Day in my Life again. Thank you Jenny.

My day started far too early once more, with a Mog call at 3AM. Music, medicines and some moving around the bed and she did thankfully re-settle. At some point later on Comeback decided to get vocal, but I didn't have the energy to climb out of bed so turned my deaf ear up and slept some more, before being dragged out of bed finally by the alarm going off at 6.15.

Up (slowly - gravity working overtime today) and kettle on for coffee. Morning routine as last month - two girls up and into wheelchairs, breakfasted and ready for the day. A Tuesday, so both girls off on the school bus this morning.

Time to sit down. I am just thinking about my second cup of coffee when I remember the large pile of branches in the back garden which have been there since Saturday. So forget the coffee, out to the garden, carry them around from the back of the house past my upstairs neighbour's front door and drop them onto the front garden, ready to load into the van.

I knock my neighbour's terracotta pot over, shattering it into a thousand tiny pieces, spreading fired clay and a weird assortment of twigs, tissues, and general stuffed-into-a-pot detritis flying. Oops. Neighbour not around, so I stuff an apology and a banknote through the letter box and hope for the best.

Now to load the van.
I may not have thought this through properly.
On to the local tip, where four members of staff stood and chatted as I removed half a tree from my van and posted into the garden waste composting skip.
and then a quick race home for a weed-free jumper, before heading over to school to collect Little Fish. Next stop town; our destination the GP surgery. "I not poorly Mummy I not need doctor". No Little Fish, no doctor, just a nice nurse with a couple of long needles to stab into you. Thankfully one nice nurse who was happy to inject legs rather than arms, so Little Fish's left leg is now full of measles, mumps and rubella, whilst her right leg has whooping cough, diptheria and possibly TB, I lost track at this point. Little Fish is anaesthetic from the waist down in theory. However she definitely noticed the needle going into her right thigh, and possibly into her left as well. Ordinarily this would be great news, however she needs major reconstructive hip surgery in the next few months - if she is going to develop sensation down into her legs I'd really prefer her to wait until after they've broken bones and inserted pins and done everything else they need to do.

The nurse looks through both girls' lists of immunisations and decides that we all three of us need to make appointments to get our annual 'flu jabs, and in addition both girls need to come in for a pneumonia vaccine. Lovely.

We collect Mog's next month's supply of inco pads before we leave, then potter around the shops for a bit before coming home. Lunch is swiftly followed by a visit from Little Fish's physiotherapist plus a student physio. Too swiftly; the kettle has boiled but my coffee has not been made. Little Fish is not inclined to be cooperative, and refuses to sit on the ball, allow the physio to examine her legs, or do anything other than play with the zip on the student's nice pink cardigan. Despite this, some physio gets done somehow.

Mog gets home, and the physios leave. And the phone starts ringing. Hospital staff from two different hospitals with three different problems. Office staff with an extra problem. Someone trying to sell me a time share in France. Speech therapist, hospital again, and the local supermarket. Both phones are now beeping with low battery indicators.

Our next visitors arrive, my social worker and a colleague who used to be involved with both girls and wants to catch up with us all. A good chat, marred somewhat by a distinctly scratchy Little Fish. Nevertheless she manages to impress the social workers by her ability to sort Mog's feed pump out when it starts beeping, and by putting her bib in the washing machine after she has finished eating. Neither social worker wants coffee, so I do without too.

More phone calls; our carer ringing to say she will be late, and hospital phoning to tell me to discontinue one of Mog's medications. They want her to come off it straight away without reducing it slowly, something which may cause her to go into status epilepticus. I'm so pleased. Hopefully not taking it any more will stop her evening screaming.

We are still chatting happily (social workers in the sitting room, not hospital doctors on the phone) when our carer arrives. We like this carer. She walked in, saw that we were busy, and immediately went to get the bathroom ready for the girls. Persuaded Little Fish to have a shower with Mog so I could carry on talking without being interrupted, called me in to sort one minor little hitch out, and just quietly got on with things until things stopped needing to be done.

Social worker left, our neighbour (a different one to this morning's neighbour) popped in with a parcel which had been left when we were out. Nothing exciting; a packet of tights from Debenhams. That handed over, I helped the carer finish dressing the girls and started posting them into bed.

Little Fish was in bed and tired by 7. Mog was in bed and medicated by 7.30. Little Fish went off to sleep straight away. Mog has cried and complained and sobbed and screeched and hiccuped and choked and cried some more and is continuing to do so. She has had painkillers, she has had sleepy medicines, she has had cuddles and she has had music. And she is deeply unhappy, and it is only in the evening, and I don't know why, and I don't know how to help her. The neurologist wants to give her three days off her newest anticonvulsant and then try her on sodium valporate again. We tried this a few years ago and she simply fell asleep for a week. Right now, I'd almost take that over the evening screaming. But then she came out in a rash, and I'd rather not take that again. So we will try this medicine and see how it goes. Chances are though that it won't be hugely helpful.

Two girls in bed, I have a bowl of pasta for my own supper. During one of my attempts to settle Mog, Comeback decided he preferred pasta to Whiskas.
Is this, or is this not, the face of a guilty cat? He's lucky I'm too tired to drive back to Stadhampton tonight. Only one cup of coffee all day will do that to a Tia.

And now it is nearly 9, and Little Fish has been weeping again. Mog weeps on, beyond tired, eyes closed and unresponsive, just a quiet desperate cry. I have one more medicine I can give her tonight, and I would prefer to leave it for a few minutes longer. But she can't go on like this.

So that's my not especially wonderful or cheerful Day this month. Looking forwards to reading about other people's Days; hopefully someone somewhere is having a nice peaceful relaxing one!

edit. It is now 10.20PM. Mog has gone to sleep - without her sleepy med. Little Fish is still a little unsettled but mostly asleep. And now my upstairs neighbour is having what might have started out as a party but is now loud music, neighbour screaming and shouting, other voices trying to calm her down.

Monday 13 October 2008

It's the little things

Someone talked about grief pockets; like a plane flying happily you suddenly hit a patch of turbulence.

I had a phone call tonight from a friend. Her daughter has had an accident and hurt her leg. She needs a wheelchair whilst she recovers.

We have a spare wheelchair. It has lived in the garage for the past eighteen months or so. One upon a time, it was my Grandmother's wheelchair. It's a wide wheelchair, with push handles just that tiny bit too low to be comfortable for the pusher, but with a big cushioned seat and comfy backrest.

When Grandma died, we cleaned it off a bit, and it became Goldie's back up wheelchair. She didn't use it very often, just when her regular wheelchair needed fixing, or when she needed to travel in a car rather than our accessible vehicle.

So tonight, I fetched it from the garage, and grabbed a bowl of bleachy water to clear the mildewcobwebs off.

And I found myself scrubbing bits of chocolate out of the strap.

And then in my head, I could see Goldie's eyes light up and her voice whisper "choc-o-layte" in a hushed, awe-filled voice reserved for only the most extra special of things - chocolate, her grandparents, her favourite videos. And I could see her hands dance that chocolate into her mouth, and then search her lap for any missing crumbs. Thinking back to the last time she would have used this wheelchair, that would quite possibly have been an Easter Egg she was demolishing with such glee.

And then I dipped my scouring pad back in the bleach, and cleared it all away. And my friend came and took the wheelchair away. And I was sad.

And then the phone rang again, the feed pump bleeped, the cats demanded dinner, and life moved on again.


Sunday 12 October 2008

Meals for Wheels

Here's a thing. I complain about our NHS (National Health Service) from time to time, but I am so thankful that it exists. I know that, if I fall ill, I will be given treatment. If my girls need medication it will be prescribed for them, and I will not have to pay for it. When Mog's feed needs change, her special formula can be changed, and all it takes is a call to the dietician.

Still equipment related, but not NHS based, I can use the girls' Disability Living Allowances to pay for our van. I could, if I wished, have a new van every three years, and if my income was low enough, I could get a grant to cover the costs of the adaptations. We have chosen not to do that, but these are all options available to us.

I don't want to get into an argument over which system is best, ours, or the US insurance based system with Medicaid for those who are deemed to be truly in need. I have however over the past few years been truly shocked to learn what basic things Medicaid does not cover. I didn't know, for example, that it is not possible to get medications through Medicaid once they have been made available over the counter. Perhaps a bottle of children's ibuprofen is fairly cheap. But if your child takes it several times a day then one bottle doesn't last very long. And when you also have to buy a bottle of paracetamol every couple of days, and when your son has multiple allergies and is tube fed, so only certain brands will do, that soon mounts up.

Now imagine that your child has a tracheostomy, and requires oxygen to be bled into his lungs via the tracheostomy all day long. The trach is connected to an oxygen concentrato via a length of corrugated tubing. This tubing must be changed every three days, in order to reduce infection risk to an already vulnerable child. The insurance company will only provide enough tubing for it to be replaced once per month.

Imagine that your child has a tracheostomy, that your child has to breathe through a hole in his throat. There are some highly specialised pieces of kit which sit in that hole, keeping the hole open, keeping the airway open, and allowing the oxygen from the concentrator to reach the lungs. These pieces of plastic, the tracheostomy tubes, need replacing every week to ensure they don't harbour infections. The insurance company will only provide two per month.

For my friend Trina and her son Jophie, this isn't an imaginary exercise, this is the reality of their daily life. Jophie is a boy who has had far more than his fair share of issues over his lifetime. Trina is a dedicated parent who spends her life keeping her son alive. And in the minutes she has left over from meeting all his medical needs, she has to try to argue with insurance companies, and somehow find the money to keep buying the supplies he cannot live without.

Jophie is colonised with several different super-bugs. He cannot reuse disposable equipment without serious risk to his life - when this has been tried, he has become seriously unwell extremely quickly and ended up back in hospital in PICU. Reusing sterilised trach tubes caused an ulcer which nearly ate through to his oesophagus, another potentially fatal problem.

Now they have a new problem. Jophie is no longer able to sit in their current vehicle. He cannot sit up for any length of time and needs to travel lying down. Their present vehicle is too small to fit him lying down, a nurse to keep him safe, his wheelchair without which he cannot move at the other end of his journey, and all his other equipment. Additionally the vehicle is old, and starting to have problems which come with old age, meaning that even if Jophie is at home with a nurse, Trina is unable to drive far, in case she breaks down and is unable to get back to him.

These are just a few of the things which Medicaid does not cover, and which Trina is struggling to provide for her beloved son. Trina and her friends have worked hard over the past year trying to find ways of raising money for Jophie's needs, and they have finally come up with this:

This is more than just a cook book. This is a chance to ensure that Jophie gets the things he so desperately needs. Please consider placing an order.

You can find more information about Jophie and Trina both at the Meals 4 Wheels website and at Trina's blog - Jophie's Jungle.



Autumn came early to our house. The leaves had a little assistance.
This poor little tree is now all cold and ready for winter.

That's not too severe a prune is it?

As Grandad and I were busy in the garden, Little Fish was taking care of things inside.
Refilling the feed pump and setting it back to run.
She's very helpful. I haven't yet let her plug it into Mog's button - I think I'll let her manage her own without tears before I set her loose on anyone else's. But she saves my sanity with her ability to stop the thing from bleeping.

And so, after a busy day, this:
I can't decide whether it's facing your fears or sleeping with the enemy. But I think it's safe to say they're getting used to each other.



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