Monday 30 March 2009


I am too tired to blog!

We're all here. We're all well (I'm ignoring one child's mild wheeze and another child's green snot. We are all well, we will all be well and we are most of us going to Switzerland on Saturday. Illness has no place here).

Two small children are sleeping, the third is at least silent.

The cat has decided that the cot is the best if not the only place to sleep. Until I typed that last sentence, at which point he decided to make a liar out of me.
And I, I have just paid a considerable amount of money (to our babysitter) for the privilege of acting as lavatory attendant. Normally, I count Monday night and Guides as a nicely stimulating break from life with my little people. Tonight for some reason I had to spend the evening chasing them out of the toilets, mopping the floor, walls and doors, and apologising to other people who share the building. Seriously not impressed.

Nor's GowayPhoto taken over my shoulder as he watches me type.

I'm off to bed before he decides to act as censor.

Sunday 29 March 2009

New Wine

I was pounced on last week and asked if I'd talk about our experiences from New Wine last year, what we got out of it, and why we're going again.

And I said yes, and then I thought something along the lines of ARGH NOOOOO, and then life got a little busy, and I thought things through a little bit and came up with a few reasonably coherent sentences.

And then this morning I was called up, and asked some sensible questions, and I think my answers went something along the lines of "well aha ha ha, it was wet and um wet and um ah really great and we loved it and we're going back and we liked it and it was great and it was great for the children and not just the special stuff for the special needs and it was praise from early morning mad people until late at night and no we didn't really get to know anyone cos it was wet but it can't be that wet this year and um it was great and ah ha yes oh God was there too". And then the ground refused to open up and swallow me, so I attempted to hide myself behind a microphone stand by turning sideways (and those of you who know me will know what a futile effort that would have been), and waited for the two far more coherent chaps to sell the idea properly.

And that would've been that, and I'd have skulked off to the back of the church and sat in my nice safe seat behind a tall man with a voice like a bittern, and hoped never to have had to do that again. But, I have a blog, and some people do actually read it (which still surprises me!), and so for those from church who read this blog - or for those not from church but also considering New Wine this year - here's why you should book up to go.

First, cos they're always good fun - piccies and my posts from NW last year
Part the first - in which we get wet.
Part the second - in which the Youth get wobbly.
Part the third - mud and monkeys.
Part the fourth - Little Fish washes up.

It was a good week. There is a hugely vast programme of seminars, utterly impossible to fit everything in. But if you feel the need to be serious, there's plenty of opportunity. There's also a huge market place with shopping (Mog was happy), coffee and cakes (Tia and Courtney were happy!), and even in an ocean of mud, there was plenty of opportunity to get to know other people from church without the rush.

On a Sunday Morning,, we have coffee between the services. Half an hour, with half an eye on the clock to check the roast, a list of people to pass on different messages to, an equally long queue of people waiting to grab you just for a minute about something terribly important. It's coffee and a biscuit, which is never a bad thing, but it's also rush rush rush and lots of admin. And it's easy to stand on the corner (or in the middle), and be buffetted by boys newly released from the confines of Sunday School and needing to bounce, and to spend the next 15 minutes avoiding giving any child severe scalds (or scolds), and doing very little else.

New Wine is a week of how coffee between the services could be, if time were no object, and if there were no big list of things to do. It's a week of setting aside the busyness. Stopping the doing and just being, just spending time together. Forgetting the lists and focussing on the people. I don't think you can do that in a 30 minute session with the congregation for two services squeezed into one church hall. And in the busy busy lives most of the church members lead, I'm not sure it's something which can happen on a weekly basis, although homegroup, sorry life group comes closer. But New Wine is a place where that can happen. And God's there too, also quite keen on furthering our relationship with Him.

There is a phenominal amount of teaching available. There are seminars from silly o'clock in the morning until stupid o'clock at night. There are serious seminars and lighter ones, series running the whole week and one offs, and some people will fit several in each day, others maybe just one or two the whole week. There are workshops on prayer and bible study and dance and glass painting and just about anything else inbetween. The Our Place team (ministry for the families of children with special needs and disabilities) was wonderful.

We woke up to the distant sounds of early morning worship (I suppose some mad fools really good sound Christians actually went to them, must've done judging by the sounds!), and fell asleep to the beat of the music echoing from the Youth Tent until way past late. And the main worship and teaching sessions, and the main evening events were truly Awesome. God was there too. And doing some quite amazing things.

The girls went off to their own sessions. Little Fish had Mr Bible at her sessions and thought he was seriously cool. A shy three year old, she nevertheless learnt a lot about God in the week - I guess He must have been in their sessions too. Mog started the morning in the mainstream group and then came over to Our Place and had a wonderful time there. All the children prayed over every single day for a week - and the gospel presented in a very simple way. I'm thinking God was probably there too.

Am I convincing anyone yet? Perhaps our little babble this morning might have been more effective. I will say this more though; if you're worried about how you'll cope with camping, consider this: we camp with two wheelchairs, one ventilator, and an unfeasably large amount of medical supplies. We camp with two girls who have difficulty controlling their body temperature, and we camp with a child on a special diet. Oh - the medical facilities on site are excellent too, and they have GPs who hold clinics should you need them. Don't ask us how we know this. If that doesn't convince you that camping is a possibility, consider coming and hiring a caravan. Or staying nearby. Or even just coming along for a single day.

Relationships are important. In a larger church it is easy to get lost. It is very easy to turn up on a Sunday morning, and disappear again until the next week. But we are the body of Christ, and for the body to work effectively, the hand needs to know where the arm is going, and the foot needs the eye to guide it. When we all spend all our not-sitting-listening-to-the-sermon-or-praying-or-having-a-brief-time-of-worship time running around being busy, it's easy to all be running in different directions. New Wine is a chance to reconnect to the body, and for the body as a whole to reconnect to the Heart.


Edited to add a link to the New Wine site for those who have no idea what I'm talking about!

Saturday 28 March 2009


Today I have
  • hooked up 9 tube feeds (should've been 10 but we missed one and she isn't dehydrated so I'm not worrying)
  • showered three people
  • bathed two people
  • fastened four sets of jeans
  • fastened five pairs of pyjamas
  • given 9 sets of medication through three different kinds of tubes
  • used 8 catheters
  • sterilised 12 syringes and four giving sets
  • used another 235123 syringes (approximately)
  • washed my hands 23986740730987t59876296098 times.
  • mopped up sick and spit and poo and a ridiculous number of breadcrumbs
2 + 1 = 21 not 3 I'm sure.

I am thankful for
  • small children giggling over silly games of peep bo
  • long life batteries
  • feed pumps
  • my parents
  • hand cream
  • all forms of telephonic communication
  • Mothercare
  • the ability to multitask
  • a strong back and a reasonably level locality
I am also
  • tired
  • stressed about the accident we were in yesterday morning - we are all fine, no one was hurt, but there is minor damage to my van and major massive damage to the car we hit. Bits of that car are still scattered across our road. Not good.
  • cold
  • buzzing with a list of things I need to have ready for tomorrow.
  • very pleased to be fostering again but also very pleased that our holiday means this can only be temporary at the moment.
  • tired.
Mog is rather underwhelmed by the whole experience. She is definitely not impressed with our temporary addition (ta)'s noisemaking capabilities.

Little Fish is very excited about the ta. She has spent the day informing everyone that the ta is hers, trying to do everything for the ta, and working out how to play with the ta. At one point she came to me, puzzled "I take that baby's toy away, that baby cry, bit sad now". I suggested that returning the toy might make the ta (who is not a baby!) happy again and she looked utterly bewildered at the possibility. But duly went off to try it, and came back to report success. Tomorrow's mission will be to persuade her it isn't necessary to continually repeat the experiment.

Tomorrow we add to the general levels of confusion, chaos and mayhem. It is Little Fish's birthday. She is having a party. Here. May God have mercy on our souls.


Friday 27 March 2009

Like falling off a log

And just like that, we're fostering again.

Phone call at lunchtime, could we possibly take a child? Visit in the afternoon and everything still up in the air, and then finally at 8PM one child arrived with a bagful of belongings and a box of medications.

Depending on how you time it we've either been on a break for one year (since Mog's court order came through), 15 months (since Little Fish was adopted) or two years (since our last temporary addition moved on). And although I've been making mutterings to my social worker, I've been reasonably happy to just enjoy being the three of us.

This child may not be here very long - apart from anything else we're flying to Switzerland next week! But it's a start. Little Fish is very excited - or was, until the sound of loudly beeping electronic toys woke her up. And now there are three small children all sleeping sweetly, and I have syringes to sterilise and an extra set of needs to work into our regular routine. Fun times.

I knew I was cleaning for a reason!

Thursday 26 March 2009


Little Fish moved in with us forever in January/February 2007. Back in September 2006, she visited with us for a fortnight whilst her regular fostercarers went on holiday. We were still working on getting our approvals sorted out to adopt, so having a chance to get to know her as a baby still was great. In preparation for her coming, I made a nice soft snuggly blanket.

And then she didn't want the blanket, and it dwarfed her, and Mog loved it, and I made something else for Little Fish and Mog adopted the blanket as her own. Two years on, she still wears it to school every day, snuggles under it when she is ill, uses it as a pillow at the hospice - I'd say it was definitely meant to be hers.
Which is all well and good, and Mog had a smaller blanket made by a friend which she had outgrown so which became Little Fish's when she moved in. And the girls have beautiful Project Linus quilts, and we have a small stack of crocheted blankets courtesy of my late Grandma, and a pile of fleecy ones given as presents. She's not been deprived.

But, for the past few nights she's been smuggling Mog's blanket into her bed at night. And asking for "me blanket same Mog". And asking "you make me blanket yet?", and not wanting any of the others.

So yesterday we shopped for fabric. Always fun. Little Fish said she wanted red and yellow, so naturally we came away with this:
And it's a long way off being finished, and it's definitely not perfect (I do not like cutting and piecing. Unfortunately, this shows). And it's so far off being anything like Mog's that I hope she doesn't reject it as not "me blanket same Mog".

But it's a start.

In amongst all this cleaning I am realising how much everything has stalled. It's not just the sorting out Goldie's stuff. It's the realisation that although I have walls of photos of Goldie and Mog, I have only printed out half a dozen of Little Fish, and only framed half of the ones I have printed out. I have dozens of nice pictures of Goldie, Mog, and myself; I have lovely photos of Mog and LF together, nice ones of Mog and I, and nice ones of LF and I. But no decent one of Mog, LF and I. And I have avoided getting one taken, because Goldie can't be in it too.

We can't stay stalled forever. Sooner or later things have to start ticking over again. It's been a bit of a shock really to see how much I have stopped, when I thought that actually I'd been keeping things moving along nicely.

The new blanket is a good place to begin, I think.


Wednesday 25 March 2009


It's hard work, this cleaning stuff. Not just physically hard, but emotionally draining. Every pile of clutter contains something to remind me of Goldie. What's important, what do I need to keep? And what to I need to let go?

I have a box of files relating to her education - they're irrelevant now; they can disappear. I have bags of bits relating to her medical stuff - copies of old reports, out of date letters, they can all go. Christmas cards, Easter cards, Get Well Soon cards; all these have gone. But for some reason letting go of the Birthday Cards is harder. Goldie's Birthday was near Christmas; as far as she was concerned, Christmas was just one long celebration of her own birth and life. Cake after cake after party after party; how many other children have the whole school hold plays and concerts in honour of their Birthdays? Short of confidence, she was not! And so many people who didn't see her very often used to send her cards. I saved them all, planning to put them into her journal one rainy day.

Well the rain came and the hot floods rose, and the book never got finished. And I'm not sure that I want to finish it now. Ending it with her Birthday cards would be false; ending it with sympathy cards and funeral cards would mean either drastically editing them or else having more than half the book be about her death instead of her life. So I'm stalling on that; a handful of birthday cards is not the mountain of clutter which had overtaken this house before I started.

Photographs. So many photographs. A computer full of them, a hard drive filling rapidly, and so many printed off. Many which I printed for her funeral collage and then didn't use. I have electronic copies; I don't need the physical ones. A few I could frame, but to frame them all would be to fill even more of our walls with Goldie Composites; and whilst her smile was pretty spectacular, I don't really want this house to be a shrine to Goldie. An Album might be sensible, but do I really want an album full of rejects? And yet, to throw them away means sorting through them carefully; double checking that I do have the digital copy and haven't confused my own photos with gifts, and it means doing it at a time when the girls aren't around so Little Fish doesn't get cross with me. She likes sorting through Goldie photos. Maybe that's reason enough to keep them still in their little box, watching the numbers of them slowly drop as they get chopped up, scribbled on, dribbled on, and force fed yoghurt. And it's only a little box, not as if it takes up too much space, right?

Unused emergency personal casette players. Who uses these any more? Goldie used to get through one a month; one a week in holiday time. Not just chewing through the headphones (got a fair few of them too) but clattering them to the floor and munching on the buttons and dribbling into the battery cases. And they're only small packages, they don't need much room...

Back up voices from Elmos past. Goldie loved a particular singing Elmo. Only one type, only one song, and only one particular version of that one song. No substitutes. And again, loving destruction rate fairly high. The bears seem to have disappeared (although I think there may be three lurking in my bedroom somewhere), but the guts, the noise boxes, are stacked behind my knitting needle boxes. And they're Goldie's voice - how can I throw them away? And yet, how can I bear to let anyone else play them?

More photographs. A gift photograph. Not a beautiful photo necessarily, but a representative ragamuffin photograph, a happy smiling relaxed Goldie chilling out in her new home, Elmo beside her, legs all over the place, hair wild and hands dancing. Precious to me because it is proof that she was happy even when I wasn't there. That's reassuring. And only one copy, so important to keep it safe.

In another pile, an unused photo frame. Not a perfect match, but the right size, good and solid, and nicely protective. It is as I slide the photo into the frame that I notice the date. It is dated the evening before Goldie had her accident. It is, therefore, a photograph of her last whole day. The last day she danced without pain, the last day her body worked in the way it worked for her, the last day she sat up or sprawled on the floor or ate or drank or did anything but suffer. The last day she wore clothes.

And I lie; it is a beautiful photograph.

And my heart hurts.

Tuesday 24 March 2009

Are you bored yet?

And after

I'm not sure I love it but it definitely feels bigger!

Today Little Fish and I took a vanload of rubbish and cardboard to the dump. She was very pleased. I was less excited, especially when I got home and realised I had left behind half the cardboard and forgotten yet again to to take the old television that Comeback peed on shortly after his arrival.

With or without the old TV, the house is still substantially better than it was! And Little Fish has requested something else for tomorrow; will have to see what time she wakes up as to how feasable it might be.


Monday 23 March 2009


Today I have
  • cleared ten big bags of rubbish out of my sitting room
  • helped to cook, serve, and clear up a meal for 28 mothers of Guides (we celebrated Mothering Sunday by getting the girls to invite them, and then helping them to cook for them).
  • dealt with two very different but equally fragrant code browns.
  • sorted a minor mountain of photographs into frames.
  • organised a major mountain of paperwork
  • made several important phonecalls and actually managed to speak to most of the people I was looking for.
  • taken Goway to the vet for his final round of boosters.
  • had an appointment with the continence nurse for Little Fish (she's most confused by the idea of two wee wee nurses; one who looks after the before and one the after!)
  • worked out how to use these bullet points
  • but not quite worked out how to make them stop!
Oh there we are.
I am tired!

The sitting room is not finished yet. I either need another bookcase or else to be more ruthless in my book culling. I don't seem to be able to edit them down any further though. And I now have a mini paper mountain needing to be filed. I have 16 rubbish bags to take to the dump tomorrow, and some smaller bags for charity shops and freecycle. Slowly the house seems to be growing again. This process is not helped by my helpful Little Helper, who sees me throwing things seemingly randomly into boxes and bags and bedrooms. She grabs piles of neatly organised stuff and pours them onto the floor, crying "there we are, Mummy, I help you, look, all messy now".

I think it's bedtime. And one day there will be more in life than cleaning. Sorry for boring you all - and M, sorry that you no longer have "it's better than Tia's" as an excuse. Little Fish is available for hire should you wish for assistance. She's going cheap. Very cheap. Please take her!

Sunday 22 March 2009

Dear Carer,

Did we really need to have this conversation?

Carer, this morning - "Where is Mog's seat cover?"
Me - "On the clothes horse in the sunroom or on the kitchen radiator"
Carer, 2 minutes later - "Where is Mog's hoist sling?"
Me - "On the clothes horse in the sunroom or on the kitchen radiator"
Carer, 2 minutes later - "Where are Mog's tights?"
Me - "On the clothes horse in the sunroom, or on the kitchen radiator. Really, everything like that will be on one of those two places if it isn't in her bedroom"
Carer, 10 minutes later - "Where are Mog's oh no, I'll go and have a look"

Carer, 10 minutes later - "Where is Mog's hairbrush?"
Me - "Wherever you left it after brushing her hair on Friday. We couldn't find it yesterday".
Carer - "At least it's not on the clothes horse..."

Carer, this evening - "Where are the towels?"
Me "On the clothes horse or, altogether now"
C and M "On the kitchen radiator!"

She's getting there. Although she hasn't learnt the most useful thing ever yet - just ask Little Fish. She knows everything.


Saturday 21 March 2009

All work and no play

Makes for a tedious life.

So we took a break from the Big Clean yesterday, and met up with friends in town. Little Fish commandeered my camera to take photos from the Farmer's Market.And then one inside the coffee shop before rejecting the camera in favour of the iPhone. I do like our iPhone, but the camera on it is definitely not one of the best. This Little Man did his best to pose for Little Fish, but the camera wasn't having any of it.
And it can't really sort out contrast
or focus...
But, happily, we were at the coffee shop (yes that is my leg) to meet friends, not to show off our skills with a camera. Nice coffee, good lunch, excellent company, lots of laughter, mostly inappropriate if you don't share our reality, and a few hours to set ourselves up for the rest of the week.

And then home and back to the cleaning.

From thisto thisand thisThe blank wall admittedly uninspiring (in fact, is that the most boring photo ever posted to a blog? Probably!), but when we have our next round of building works it will actually become a vast extended doorway into Mog's bedroom. Hurrah.

And then the playroom and the sunroom.
And whilst I appreciate that this photo probably resembles most people's "before" photos, I'd just like to say that it's been so long since it looked this good, that I found the following photos in amongst the piles of crudunfiled paperwork

Yes, she really was that small once, and yes, it probably has been that long.

It's been an odd sort of a clearout; I keep finding things which have no use now whatsoever, and yet I can't quite throw them out. I did throw away Goldie's educational Annual Review reports which I found in one pile, and I did throw out 57 odd socks and an ancient swimming costume. I couldn't throw out the 18th birthday cards, nor the blurry photos from the school notice board, and nor yet the label she "drew" for a sunflower seed on Sunday morning at church. So far, so sentimental, and probably just about ok. But what do I do with the 23 order of service cards from her funeral? The commemorative jumper from the her first Guide Camo? The twelve pairs of socks which did actually match, but are too worn to be handed on? The belt from one of her cardigans?

Most of it is probably rubbish, and the sensible thing to do would be to throw it away, just as the sensible thing to do with my phone would be to delete the number of her Home, and just as sooner or later I'm going to have to replace my keyring (which has a photo of her on it). And yet...

And now my dinner is ready (and yes, the kitchen is still clean and shiny), and I am going to enjoy it. I'd enjoy it even more if there were space to sit down with it in the sitting room, but all those papers had to go somewhere, right?


Friday 20 March 2009


Long day. Long week actually, but I have been busy.

From this:

To this:
All shiny and new again.
And the bathroom still looks like this:

This should not have taken me a week. And of course, now that it is done, no one is allowed to eat in the kitchen ever again, and takeaways in the garden will be the order of the day year. Happily, I have no problem with that.


Thursday 19 March 2009


Today was one of those perfect days. I woke up early this morning and I knew it would be a lovely day. The pre-dawn light had an air of anticipation; waking up the birds and then the world to the wonders of spring.
A bright, bright, sunshiney day; warm enough to leave cardigans unbuttoned but cool enough to want to be doing things.
Ideal weather for spending a day weeding, pruning, pottering about the garden just enjoying the freshness of the day and the beauty of another year.
Hunting for birds' nests and hoping they are intruder-proof this year.
Sorry, birds.

It was in fact an utterly glorious day. Walking to and from preschool was a delight matched only by the bliss on Little Fish's face as she burst into preschool ready to share both Makka Pakka Pants AND a cheese sandwich in her lunchbox. Lovely.

So it's a bit of a shame really that I spent the time she was away not on my knees on the damp grass nor even at a garden table with a cup of tea. Instead I spent the day in the kitchen making some of these
And a dish of this
which came out perfectly, leading me to wonder why I can make excellent savoury tarts and quiches yet still fail to make a decent baked egg custard.
And just about have time to squeeze in some of these
Before picking Little Fish up from preschool and beginning the afternoon and evening routine.

We had a slice of this for our tea
and Little Fish said "I do not like this". Which caused me pain for my wasted efforts and pride that she had finally added the word "do" to her vocabulary. And then annoyed me* until I had a moment of inspiration and told her it was cheesy onion noodles. At which point she cleared the plate. So there you have it, cheesy onion noodles folks - shortcrust pastry baked blind, onion rings sweated in butter until soft, and a nice egg/cheese/mustard/custard mix over the top. Not Bird's custard, obviously. Tasty.

And then it was time for a spot of Grannie visiting, and then it was time for Rainbows, where I had the dubious pleasure of helping my daughter manufacture a Mother's Day card for her to give me on Sunday. And then another Rainbow Guides pleased the Rainbows mightily by bringing in her newly awoken tortoisesDid I say pleased the Rainbows? Pleased them all but Mog, anyway. Who was most disgusted.

And I shall leave you with a picture of Little Fish destroying the radiology outpatient's department playing in the waiting room yesterday.
Oh for half her strength!

And now, since I was up ridiculously early this morning, and since the clear blue skies mean the temperature has dropped really rather impressively now, I am off to bed.
Night All

*which is when and why I nipped outside to take the flowery photos.

The rest of the day

I left us not late for our next appointment.

Little Fish had her appointment -
me - "Did Kate come to see you at preschool today?"
LF - "No".
me - "So what did you do at preschool today?"
LF - "Kate came to see me".
me - "Oh".

But our God is good. Little Fish's kidneys and bladder are working well; she may still need one op but she won't need the big op. And as we were waiting for the ultrasound (fume hiss) we saw the specialist Speech and Language Therapist (SLT) who reminded us she was coming with LF's own SLT to assess her feeding later today. An appointment which had disappeared from my diary.

We did get back in time for our next appointment, and I have a slightly different route to try myself next time.

Once Little Fish had met up with her 1:1. I got home, and had time for lunch before Mog's bed man came back to perfect her bed. And he managed, and her bed now goes up and down at both ends as well as tilting and profiling. I can't speak highly enough of this bed - with one bowels-related exception last night; Mog has slept every single night since we had it with no sedation. This is huge - she's been sleeping in an armchair or dozing in her wheelchair or bed-surfing (starting the night in one and ending in another) for weeks. And now we put her into bed, we put her music on, she falls asleep and does not wake when the music ends. And in the morning, she wakes up, has her morning seizure, and then waits to start the day. Fabulous.

And since the bed man was here, I thought probably lying on the settee with my feet on the windowsill was possibly not the most impressive use of my time, so I cleared another surface in the kitchen. At the moment we're averaging one surface per 2 hour slot, and one binbag per surface cleared. I'm not sure whether to be impressed or appalled, but it's satisfying either way!

And he went, and I collected Little Fish from preschool, and she played outside until Mog's bus came. And then our own bus was returned from the garage together with a large bill for necessary MOT work. But even here, this was good - I'd rather know about splitting brake cables and steering cables before they become snapped brake and steering cables.

And then the SLTs arrived, and Little Fish showed them how she can waggle her tongue from side to side. And up and down. And in and out of her mouth. And she showed them how she can control her own dribble now and not let it drip onto her tshirt, and how she can say "yes please" with two SSS sounds (although no L yes but never mind!). And so we fed her a cheese sandwich and a chocolate biscuit, and they watched her eat. And she PASSED! No head tipping to use gravity to move the food to the back of her throat. No choking. No food pouching in her cheeks or falling out of her mouth. Just some really nice chewing and mashing and swallowing.

It's not perfect yet. She's still got a lot of catching up to do, we still need to work with her chewers and her oral skills, and she's not ready to chomp her way through a plate of steak this week. But she passed the cheese sandwich test! And can have brown bread grated cheese sandwiches to take to preschool instead of a flask of babyslime. She can have bread and paté, she can have peanut butter sandwiches, and she can even start trying a spot of toast (which means I'm going to have to buy a toaster; my waistband will not thank her for this). We're off to Switzerland in a fortnight - this means Little Fish will be able to share most of the meals we find rather than needing to live off cupasoups and instant mash for two weeks. Fantastic! She drank well for them too, but I'm not sure what the decision on that was, so we'll stick with the tube for most of her fluids for now.

And whilst they were here, Mog did her "I'm drowning I'm drowning HELP" choke. And LF's SLT moved to avoid the line of fire (wise woman!), and the specialist SLT asked after her swallow, so we told her how she'd lost it in her illness back in the Autumn. And we talked about secretions and saliva management, and ENT referrals and breathing referrals, and positioning and all the things we've tried and all the things we're waiting for. And she offered to do some "Thermal Stimulation" (which seems to involve wiping the inside of the mouth with frozen cotton buds to wake up the senses again), and will try this next week when we go in for a sleep study! No one has suggested this before - LF's SW had never heard of it, and I assume Mog's SLT is the same - it's a feeding thing rather than a language thing so not necessarily their speciality. And there are no guarantees that it'll help, and her bite reflex may get in the way of success. But it's a non-invasive, non surgical, not painful thing we can try. And that's exciting.

God is good.

Wednesday 18 March 2009

And God Said...

Tia said "Hurry up, come ON, finish that breakfast, wee faster, we're going to be late"
And Little Fish said "Why?"
And Tia said, "Because we don't have our van, the bus will be slow, we need to be leaving now"
And God said "Calm down. You'll be on time"
And Tia said "But we're always late for urology, we'll miss the bus and there won't be another one for 20 minutes and there won't be space for a wheelchair and we'll be late and it won't work"
And God said "I created Heaven and Earth and held it in the palms of My hands. Trust me"
And Tia said "Hurry UP, Little Fish, we're going to be late"
And God said "Fine, do it your way then".

And Tia ran with Little Fish up the road to the bus stop. And God sighed. And Tia and Little Fish then waited at the bus stop, panting, until the bus arrived three minutes later. Precisely the time it would have taken them to walk it rather than running.

And there was space on the bus, and the driver dropped the ramp down, and Tia and Little Fish wheeled onto the bus and sat down. And the bus crawled its way though spectacularly bad traffic, and Tia started fretting again. And God said "I will get you there on time", and Tia said "yeah but", and Little Fish started crying over the mad rush of the morning.

And in the fullness of time, and a full ten minutes before the appointment, the bus pulled up outside the children's hospital, and Tia and Little Fish disembarked, and thanked the bus driver and God. And God sighed again, and God said "Trust Me".

So Tia and Little Fish made their way to outpatients, where Tia asked if Little Fish needed an ultrasound before the appointment. And the receptionist looked in the notes and said "no". And then the receptionist phoned ultrasound to be doubly sure, and said "no" again. And Little Fish said "Why?"

And then the outpatient nurse arrived to do a weight and blood pressure and urine sample. And then the clinic nurse arrived to tell us we didn't need surgery. And then, eventually, the doctor arrived, and told us we did need surgery, and asked us why we hadn't been to ultrasound. And great was the wrath of Tia.

Tia and Little Fish went to ultrasound, and sat in the waiting room there. And sat. And sat. And finally they went through, and an ultrasonographer squeezed gel onto Little Fish's stomach, and measured her bladder. And Tia cathed Little Fish, and extracted approximately double the volume of urine the bladder had just been assessed as holding. And the bladder was scanned again, and found to be empty, and so Tia and LF celebrated their cooperative cathing abilities. And the kidneys were scanned, and found to be working correctly. And Tia breathed a sigh of relief, and God said "Trust Me now?" And Little Fish said "Why we 'ere?"

The two then said in the waiting room, waiting for a letter to take back to the doctor. And as we sat, and waited, Tia began to fret about the lateness of the hour, and an imminent appointment in a different town. And God said "How long is it going to take? Trust Me". And Tia said "I don't have much choice do I?" And God said "Trust Me". And Tia phoned the next appointment and confirmed their attendance and apologised in advance for lateness. And God sighed. And LF said "is it lunch time yet?"

The letter arrived, and the two delivered it to outpatients. And sat. And waited. And explained, politely, to the nurse in charge that if they didn't see the doctor in the next three minutes, they would have to leave without seeing the doctor. And they saw the doctor, and the doctor said "All fine, goodbye", and they left the outpatients department, just missing the next downwards moving lift.

And God said "I will get you there on time, stop fretting"
And Tia said "we'll never do it by bus, we need a taxi"
And Little Fish said "I not wanna go in a Naxi I want Dinner at a Dinner Shop why we goin' inna Naxi car?"
And the taxi driver said "Oh I remember that phase well with my own children"
And Tia thought, but did not say "Less chatting, more driving, we're in a hurry"
And God said "You will not be late. Trust Me"
And Tia breathed deeply, and let Little Fish do the backseat driving, and remembered she only had £4.73 in her purse and asked the taxi driver to go via a hole in the wall machine.

And the traffic was bad, and the roads were slow, and the lights were red, and Little Fish did not stop asking "Why?" And Tia breathed, and God said "Trust Me", and the taxi arrived in Abingdon 17 minutes after leaving the hospital.

And Tia paid the taxi driver and ran into Budgens to buy yoghurt for Little Fish's lunch. And in Budgens they found LF's 1:1 from preschool, and she took LF into preschool ready for her next appointment, and Tia finally had time to notice what a beautiful day it was.

And God said "Told you so"


Tuesday 17 March 2009

Aimee Mullins

So tonight, this is making me think.

I can't see Little Fish using prosthetics, but I wonder what her future wheelchairs might bring her?

Monday 16 March 2009

Succinct, and slightly random*

OrderOut of chaos.
And Order
In the midst of chaos.
*Thanks to L who doesn't read this but thinks she will one day, and who summarised my communications with her in this way recently.


We have lots of bags in this house.
Toy bags
Shopping bags
Feed pump bags
Lunch box bags
And school bags, and swimming bags, but the bus came before I'd finished clicking so kindly use your imagination for them. You get the point though; this is a house of many bags.

So why does Little Fish reject the many beautiful bags we have and choose to carry her baby's necessities in this Budgens bag?(and why, incidentally, is her baby wearing LF's slippers as ear muffs?)

And setting aside the reasons (I'm sure they're excellent) why it is necessary to transport a Ninky-Nonk, a toy toaster, and the tap from her toy kitchen in the first place, why this bag?
I'd tell you it entered the house by way of a carer or babysitter, or was blown in by the wind. But I'd be lying.

By popular demand, two more photos from yesterday's party


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