Friday blends.

No-blend breakfast.
250mls milk
150mls fruit smoothie (innocent acai berry)
30g four grain baby porridge.

This is our lazy breakfast, our holiday breakfast, our "oops it's early let's not wake the neighbours" breakfast. Very easy and straightforwards. I was worried about low protein but after looking at the week's food, I think I can stop worrying. We may use this even more often than we already do, or pre-mill some of the readybrek and weetabix but stick to the silent mornings.

Tea (and lunch tomorrow).
1 tin sardines in oil, with the oil.
1 big tin sweet corn.
1 large slice Chinese cabbage.
1 large slice nice bread (sourdough?).
Extra water to blend.

Thick, tasty, full of goodness. No clementine because I forgot to add it.

Tia

Thursday's blends.

Breakfast

50g oats
6 Dried apricots
1 kiwi
250mls milk.


Tea
375g lamb mince, fried with
1 large white onion.
200g carrot, mashed with
200g swede.

Blended with
250mls apple juice,
150mls water from cooking the veg,
2 clementines.

This made three pots not two - one for tea, one for lunch and one for the freezer. All good.

Tia

Wednesday Blends

Apologies for muddled photographs. Blogging by phone and tired.

Breakfast today
40g oats
A banana
An apple
3 prunes
250mls milk.

Evening blend, chicken and ham sandwich.
330mls coconut water
50g chicken
50g ham
1 large raw carrot
1 clementine
2 fat slices of bread.

All good.
Tia

Tuesday Blends

A cold morning needed Readybrek to give us all that healthy nuclear glow. 30g, with 10g cashew nuts, a small kiwi, an apple, and 250mls milk. Tasty.

Supper tonight is lazy, care of Waitrose. Poached salmon fillets (150g), 140g bag of watercress, spinach and rocket salad, 200mls apple juice, 2 cloves of garlic, a clementine and a drizzle of toasted sesame oil, blended with some pre-cooked jasmine rice.

This produced not quite enough volume, so when she's finished her tea I will offer her a yoghurt or fruit squidge (pouch of fruit purée baby food) for pudding or supper.

Tia

Monday blends

Two blends today. First breakfast - 200mls milk blended up with a small apple, a small banana, six almonds and 25g porridge oats. Add a spoonful of black treacle (molasses) and enjoy. Actually, in the interests of honesty, make that slightly more milk, a large banana and an average sized apple, then divide the spoils so Mog has 450mls and the Little Princess 150mls. But the values here should be roughly Mog's.

 

Mog took the second serving of yesterday's egg mix into school for lunch, as usual.

 Tonight's blend, chilli chicken. 150g skinless chicken breast fillets, roasted in a tablespoon of rapeseed oil. One raw banana pepper, one raw courgette, two small clementines, and a large cup of quinoa with bulgar wheat. I blended it up with 300mls green tea, partly for the antioxidants, and partly because I thought it was her usual fennel and dandelion one.

Again, two servings; one for tea tonight and one in the 'fridge ready to take to school tomorrow.

 

These pots hold 430mls each; I usually have an extra 60mls so she has 430 for lunch and 490 for tea. Mog's lunch is generally warmed and thinned by adding up to 100mls of hot water; not necessary with tea when the blend is fresh. We then flush through with another 60mls water. When we started bolus blends rather than pumped formula, Mog would tolerate 200mls over 20 minutes, with a break in the middle. Now she will take 500-600mls in around 5-10 minutes and is very happy to do so.

In addition to this, Mog has 150-200mls water with her morning and evening meds, and at 11 and 2 at school. If she's been swimming, or has had a lot of seizures, she may have a yoghurt or bowl of fruit puree to give her a bit more energy. 

Please note the values in the nutritional breakdown aren't exact; I can't always find the identical ingredients. So the values for tonight's supper are based on straight quinoa, rather than the rather delicious mix of red and white quinoa with bulgar wheat. They won't be that different, but quinoa is slightly higher in protein than wheat. And for some reason nutrition data is acknowledging the presence of vitamin D in her blends but not estimating quantities. Oh, and it's only letting me use skim milk, whereas we use semi-skimmed (2%); the only 2% option on the site insists on having added Vitamin A and "non-milk solids". I don't want to think about what non-milk solids might be being added to milk, so I'm hoping that's a US thing! 

Tia

A week of blends

Some people on our Blended Diet group have asked for some recipes, and I said I would post a week of blends. I don't usually follow recipes, just throw everything into the blender. So, for this week only, I'm entering everything I can into nutritiondata.com and recording the results. 

Tonight's blend - Eggs Florentine.

  

Three eggs, scrambled in 50mls milk. 

200g frozen spinach, blanched

1 small courgette (100g)

1 clove garlic, raw

150mls apple juice

1 potato (170g), microwaved in its skin

additional water from cooking the spinach to thin. 

  

Throw everything into the blender on low, turn up to high then notice centre of lid not on. Locate lid, press in firmly, wipe down walls and boiler, blend on max until a deep and frothy green. Pour into two 430ml containers, slurp an extra 60mls into a syringe and let cool. 

One pot for tea, one pot for lunch tomorrow, nutritional breakdown is for one serving not both. 

Tia

Edit - screenshot from nutrition data doesn't appear to be in focus. Link here http://nutritiondata.self.com/facts/recipe/2794100/2
Tia

The cute, and the not so cute.

First, Grolly. Those of a sensitive nature, or perhaps unused to the less pretty parts of complex medical needs may perhaps wish to focus on Grolly and then move on swiftly, without reading the rest of this post. Don't say she didn't warn you.

Next, weirdness. Mog's had a gastrostomy for about eight years, and I worked with children who had them for a good five years before that. That's a lot of feeds and meds, a lot of plunging syringes, making connections, blocking and unblocking. But I've never had this happen before.

 For those not sure what they are seeing, I am pushing some feed into Mog's tummy via her gastrostomy. The yellowish tube is connected to a syringe (out of shot, ran out of hands!), and I am pushing stuff through it. It runs through the button (white and clear plastic bit) and directly into her stomach. 

So far, so normal. 

What's definitely not normal is the purplish goo (her food) dripping out of the side of the button. That hole should have no direct connection to her stomach; it goes into a little balloon which we fill with water. The balloon holds the button against the side of the stomach and stops it falling out, like an earring stopper. 

So I'm pushing food in, it is somehow going into that water-filled balloon and then forcing its way out of the balloon port valve. Every day a new adventure. 

And then finally the gross post.Don't say I didn't warn you.

Here's what happens if you use mepitel on a burst blister, and the skin decides to go mad with healing itself, and grows through the mesh in the twelve hours the dressing is on. It's looking much better today, I'm pleased to say, although somehow the toenail has peeled off. How did I not notice the loss of a toenail? 

Both girls are falling apart a little. Mog's gastrostomy is still nastily sore, and she has another patch of soreness which isn't healing up. And the roof of her mouth appears to be leaking yellow goo, as of this evening. tLP is now toenail-less, whilst both her buttons are leaking, and her Mitrofanoff (artificial thingy whereby her bladder is linked to her tummy button via her appendix) is a little shocked too, after she attempted to insert a pencil into it to stop it from leaking. It's a good job we've got respite this week!

Tia

Blended Diet Adventures. Fun with Real Food.

We're a sociable bunch here. We eat out a lot, especially on holiday.

For years, this has meant that we've booked tables with "there will be four (or eight or ten) of us, two in wheelchairs, and she doesn't eat." Miss Mog has very happily either dozed as the rest of us eat, or stuck her tongue out for tiny tastes of whatever smells best at the table.

Since moving away from formula onto blended table food, this has changed a little. Instead of "and she doesn't eat," we've bought her a meal and brought it home to blend for later, whilst bringing out her preblended meal and asking for some hot water to warm it through. Nice, inclusion at mealtimes, the chance to choose from the menu with the rest of us, and eating at the same time as the rest of us.

Today though, for the very first time, Mog got to do what her little sister has been doing for years now, and what most of us take for granted whenever we eat out. She chose a meal, and ate it there and then with the rest of us.

We brought the blender with us, but the restaurant chose to use their own. There was no hint of surprise on the waitress' face, and the only only questions were what did we want it blending with (answer: the cranberry juice she'd ordered), and did we want it served in a bowl (yes please).

And Mog loved it. Food at the same time as everyone else, from the same menu as everyone else, and served by the same waitress as everyone else. And instead of Mog having a taste from everyone else's plate, we all had a taste from hers as it looked so good.

And that's what a blended diet is all about really. Real Food at the right time, the same as everyone else.

And for those interested, Denny's Spinach with Pico de Gallo and Bacon, with Cheddar Mash, blends down beautifully and would make a soup fit for anyone.

A lovely new first for the end of the holiday - and Mog, I'm sorry it took until the last night for us to think of asking. Next time...
Tia

Yum

This week's fruit and veg box looks particularly appetising, perhaps because I now have the leisure to decide what to cook and when without a small voice informing me of what she does and doesn't want and like and need, and without the constant CBeebies chatter. It's almost enough to make me want a giant bowl of vegetable soup with a banana, mango, and pear smoothie to finish. Almost...

It is, however, really satisfying to be able to cook for all three of us these days. To take some fish from the freezer, add fresh potatoes and leafy greens, scoop some of that into Izzy the Whizzy, and know that all three of us are getting what we need from things I can see and touch and smell, not from a bland, artificially scented, powder.

Oily fish tonight with some nice dark leafy veg. Chicken yesterday, with roasted roots. Leek and potato frittata tomorrow perhaps. Antioxidants, omega oils, minerals, vitamins, natural fibre. Different colours, different smells, different feels in the stomach. One and a half of us will be getting food through a tube rather than chewing and swallowing, but why should that mean different food?

I must go; the veg box came with a recipe for Carrot Muffins and it is calling my name.
Tia

Would you rather

Have this for breakfast, lunch and tea, and everything inbetween?

Or this?
Live off this?
Or this?
Tia

Special Delivery

Take one month's plastics (daily disposable bottle and tube) for two girls' tube feed. Not including the feed itself, extension tubes, syringes, spare buttons, feed pumps and chargers).

Add one month's medical supplies (sterile water for humidifier, dressings, tape) for one childAnd a selected portion of both girls' monthly drugs
(other half of the cupboard far too messy for display. And no, I don't feed the girls fish food!).

Throw a month's supply of breathing circuits into the mixAnd a month's worth of catheter supplies
Add suction catheters - this is a box of one hundredwhich could last us months, or could be used in a couple of very bad days. So multiply that box by three, to give us a very bad week's worth kept in stock.

Next bring more miscellaneous medical suppliesMouth swabs, spare tubing for the nebuliser, syringes and fingertip probes.

multiply white box by ten under one bed and six under the other, to include wipes - wet and dry - disposable gloves and aprons, creams and lotions and sprays, instruction manuals, chargers and batteries, oxygen and spare tubing, more dressings.
And then go and fetch a month's worth of incontinence pads.
Navigate your way around one indoor wheelchair, two posturally supportive armchairs, one back up manual wheelchair, one off-road three-wheeler, one wheelchair charger, one ventilator, one CPAP machine, one humidifier, random assorted splints and braces, spare bonnets and chin straps, feed - thankfully supplied in powdered form - and endless buckets of fruit juice.

Tiptoe past the sheer volume of laundry produced when an overnight drainage bag disconnects from a catheter two nights in a row, flooding bed, floor, and everything stored under the bed with a litre of urine. Slide sideways past the tent, previously stored under the bed, and wonder whether this really does mean you now need to replace it.

Step back. Into the cat food bowl. Shuffle sideways into the neat pile of regurgitated cat food and fur ball. Mutter lots.

And wonder how you managed to forget to buy chocolate where you are possibly going to squeeze storage space for three months' worth of pads, when the deliveries change.

Tia

For Catherine

It's not exactly low profile.
but I suspect you might be able to modify it - or find one that is. It's a Christmas tree connector thingy rater than luer lock, so potentially easier for thick syringes. Went in more easily than the button.

Mog has her button back now though - oh, and I'm told you can get extension tubes which go in straight, without the right angle bend. Again, may make things easier.

Tia

A Mog Merry-go-round

Start the day in a good mood, hurrah.

Watch your sister go off on the school bus, humph.

Realise you're going to hospital for an appointment, hurrah.

Sit in your wheelchair seeing less and less and less as the ridiculous hat your mother made you wear slips slowly down over your eyes before finally coming to rest on your chin, humph.

Arrive at hospital, and see your favourite receptionist who waves you away into a corner, hurrah. See your friend who has moved away but has an appointment at the same time as you, double hurrah. Hear both mothers make plans for coffee post appointments, triple hurrah and a big body kick.

Realise your appointment is now 90 minutes late, humph. And that you are seeing the registrar, not the consultant who brings a sparkle to your eyes, double humph. See the consultant at the end of the appointment, hurrah.

Finish your appointment at the same time as your friend, whose appointment has been similaraly delayed, hurrah. But discover you have to go and have bloods drawn, and your friend has to go off for a different test, humph.

Finish both tests at the same time, and hear the mothers plan for lunch instead of coffee. Hurrah. Wait at the lift, watch in disbelief as most people get out of the lift and then instead of waiting for us to get in, the remaining couple of people press the door closed button and continue the downwards journey. Humph. Watch the lift stop and flash an "Under Maintenance" message. Decide it might be a hurrah as you weren't in it at the time.

Remember the other lifts, and escape to the coffee shop. Eat a chocolate muffin and laugh lots. Hurrah. See the gastrostomy nurse, meaning the only nurse you missed this visit was respiratory.

Get back in the bus and drive home, wince as your mother knocks your gastrostomy button. Wince more when she decides you've been doing too much of that lately, and so whips it out to swap it for a new one. And wince even more when she totally fails to get the new one in. Humph.

Laugh as you get to listen to Norah Jones whilst your Mum calls for reinforcements. Laugh more when the reinforcements arrive, and even more when you are full of diazepam and pain meds, given through the temporary thinner tube. Hurrah.

Wince really quite a lot, despite the diazepam and painkillers as Mum and the nurse try hard to get the new button in. And fail. Humph.

Watch your Mum pack for a hospital visit, and then panic slightly when she remembers your sister needs to go to Rainbows. Oops. Watch Mum heave a sigh of relief when the nurse calls the gastrostomy nurse - the one you'd just seen at the hospital - and agrees on a plan of action which involves doing nothing more tonight. Gear up for Rainbows. Hurrah.

But I'm predicting a big humph when the nurse comes back tomorrow morning to have another go, and an even bigger one if we still can't do it and end up on the day ward.

Tia

Dear Abbott,

Back in February, we had an epic pump saga. Two broken pumps, three broken replacements, followed finally by two working pumps.

You apologised. You said you didn't know how it could possibly have happened. You said you would take steps to make sure it would never happen again. You set your nurse onto us; she also apologised and said she would look into it.

I didn't hear any more from you, but I assumed you might have actually been looking into quality control as well as the warehouse storage issues.

Last week, Mog's pump packed up. The new one, from February. It screamed its screamy alarm; school reset it, it settled for a bit, then screamed its screamy alarm again. And had in the meantime mysteriously reset itself to feed not 120mls/hour but 19mls/hour. Cue one mildly dehydrated child and one very long night waiting for it to catch up.

I phoned you, to ask for a replacement. And you told me you had no replacements in stock, and that I would need to just make do. I explained this wouldn't work, and you reluctantly agreed to send out a replacement not within the six hours you promise, but the next day. Thankfully, Mog was able to borrow school's pump for the rest of the night.

Today, three days after the replacement pump arrived, I have had a phone call from her class. Mog is on a school trip today. And the pump has failed. One big screaming F-26 error, one pump which has reset itself to its own preferred settings, one class trip disturbed and one child once again not getting the nutrition and hydration she is supposed to receive. She can't borrow the school spare this time, because she is not at school.

I will phone you again when she gets back from school, but really, what confidence can you give me that this next replacement pump will actually be working as it should?

You don't consider the fact that the pump will neither deliver the correct dose nor alarm to indicate an error if the tube gets a kink to be a fault. Yet you designed the tube and the backpack, and designed the tube to be too long to sit in the backpack without kinking. You don't consider it to be a problem that the pump will not always recognise the fact that it is empty, and will, on occasion, pump air into the stomach for hours on end if it has been knocked over. Your suggested solution is to set a dose; this does not help when the dose is 1Litre and the pump is knocked over at the start of that time. And you consider a wide variation in dose actually delivered to be perfectly acceptable - I put 500mls measured dose into your pump, sometimes your pump tells me that was only 450mls (which means my daughter has had her food too fast, an issue when it is running at a very slow rate), and sometimes it tells me she has had 500mls when there is still 100mls left in the bottle. With a 700 calorie diet, delivered with 700mls feed, that's quite a variation in what she actually receives over the course of the day.

You have a policy which requires erroneously delivered supplies to be incinerated, even if these are in sterile bags in sealed boxes and have simply made a journey from your warehouse to my front door and back via courier. You insist I call you on an 0800 number (which is not free from my mobile phone) and seem to think using the pump is an optional extra rather than a necessity. I would love that to be true.

To be fair, you did send us out a very nice new rucksack to replace the one with the broken zip, and it arrived the following day with no hassle at all. Thank you for that. Could you please fix the other problems though, and provide us with a pump which is safe, reliable, and accurate? Is that really too much to ask?

Tia

Gastrostomy Tubes

For Christie
Here's Mog;
She is hooked up to a pump which feeds her through it most of the day.
It runs on a battery, and lasts all day.
Very neat!

Here's Little Fish
She is nearly independent with hers now.
And just uses it to have a drink several times a day.

Tia

Lazy Days and Greedy Geese

Sitting peacefully yesterday morning, I was surprised to hear an insistent knocking at the back door. I turned around, wondering who might be disturbing us and why they hadn't come to the front, and found this posse! Headed up by the goose, they were demanding their breakfast. Whilst the lesser birds were happy to gather their largess from the ground where it had scattered, sir goose here had finer ideas and honked and tapped insistently until I allowed him to take his share directly from my hand. Later, we pushed Mog outside with a pile of crusts on her tray, but none of them were brave enough to try that.

It's not many places you go where the shops are signposted retail therapy. Still, we made the most of it, and Little Fish is delighted with her new fleecey top. Mog had a quick look but decided to conserve her energy for swimming later.

Home for lunch ("No, Mummy, not home! It is our 'oliday 'ouse), and then Sister Act for the small ones as we larger ones digested our dinner. A swim - Mog wanted just the warm salt pool today, and Little Fish wanted just to be wherever I was, and I needed to be with Mog, so we all had a nice long floaty soak. And then showers - and many evil thoughts for the faster people who kept diving into the free showers in front of me as I stood with Mog on one hip slithering towards them. Only one disabled changing room being used by families who believe having young children is a disability (I can understand this when the accessible room is the only one big enough for more than one person, but here there are at least a dozen large family changing rooms together with more general mixed changing and even more single sex changing. There are only two disabled changing rooms and they're the only ones big enough for wheelchairs. Please leave them alone!) so we slipped into the other and dried and dressed and discovered the entire afternoon had disappeared.

Fish and chips for Little Fish with drinks for the rest of us, then home and two girls bedwards followed by a takeaway for the rest of us. It's an interesting takeaway; jointly Indian, Chinese, and Pizza. We had pizza on Monday, Chinese last night. It was alright, but I am considering coming back here just for the pizza, so if anyone's taking notes, go for that!

Mog's new feed pump started screaming with an F-05 error. I'm not losing six hours out of our holiday to get a replacement; I've stuck it on charge and hope that'll sort it. We did bring the spare back up, but I'm scared to try it - 7 pumps in less than a week feels excessive.

And now I must go and start the day. Sleeping children, sleeping friends. Beautiful. But feeds and meds need sorting anyway, and the geese are gathering outside the window.
Tia

Pumps

So today Mog's feed pump decided to die on us, thankfully not until we were in the checkout at IKEA but still leaving her without feed for the hour's journey home. Got home, unloaded the girls from the bus, and went to swap Mog's pump for Little Fish's pump which was waiting, fully charged, for just such an emergency.* And discovered that Little Fish's pump not only had a wonky battery cover, something it's had for a while, but also had a big crack across the bottom of it.**

So, I phoned the company which supply them. Spoke to the chap on duty, who agreed that Mog's pump needed to be replaced (F-02 error, for those with similar pumps), and told me I must not under any circumstances whatsoever connect or attempt to switch on Little Fish's pump with the cracked housing. Took my number and promised to get someone else to call me back.

Meanwhile, Mog still needed feeding, so I was pumping her feed through manually , trying (but failing) to keep to a slow and steady rate roughly equivalent to the 105mls per hour she's used to. An interesting task, especially when combined with our more usual evening activities - getting girls ready for bed, sorting the house, detangling the cat's neck fur...

Pump service access woman called back and suggested I tried the cracked pump, as "it probably wouldn't do anything". I suggested this probably wasn't the best plan, given the first chap's absolute veto, and she agreed to send out replacements.

The replacements have just arrived. Bizarrely, the delivery chap decided to drop them off with my neighbour and post a piece of card through our doorway telling me he'd done so. I manageed to catch him; he managed to retrieve the two cardboard boxes, and I swapped them for the two defective pumps.

He left, I closed the door, and opened the boxes properly And lifted out this pump
With what appears to be a light coating of grot on the base of the charger, although the pump itself is clean.

And this pump
Which is rather less clean.

And this one
Which is quite revoltingly filthy.

It was nice of them to send three - I'm assuming that's one for each girl plus an official back up incase we need it in the future. But I really hope they have actually sent fully working pumps, not just the first three they found in the cupboard which have been sitting waiting for repair themselves. I'm not convinced that a fully serviced pump would still be covered in milk drips though.

I've just turned them on. The first pump is set to deliver at 133mls/hour and has a dose set of 400mls/hr. The second is set to deliver 500mls at 166mls/hour; it has already delivered 32 mls of that, and is beeping low alarm at me as soon as I turn it on. And the third has a dose of 400mls to deliver at 60mls/hour. Since one of the more annoying features of the newly serviced pumps is the fact they are set to deliver 0mls at a rate of 1ml/hour, I'm thinking these are quite possibly not in fact the right pumps. You know what? I hope these aren't the right pumps - I don't want to think that a company, delivering medical equipment to extremely vulnerable children and adults, simply doesn't bother to clean them first.

I'm off to charge all three of them, and hope that one at least will do the job for us tomorrow. Pass the Dettol.
Tia

UPDATE 8AM. Having charged all three overnight, I took one off charge, hooked it up to Mog's feed, set it to run, and listened to the extremely undulcet tones of an F-04 error. I switched it off, ears ringing, and took the second pump off charge. Hooked it up to the feed, set it to run and listened to yet another F-04 error.

I've just set the third and final pump up, having spent last night scraping someone else's lactulose and epilim off the charging unit. No alarms yet.

UPDATE 2PM. I phoned the company who were apologetic and assured me there were failsafe procedures designed to prevent this ever happening. I can't help feeling they're not actually failsafe if they managed to fail, but there we go. Apparently "the courier must have picked up boxes from the wrong side of the depot." I'm not convinced that's failsafe. The third worked long enough to feed Mog until the replacement pumps turned up just now, two shiny clean pumps in shiny clean boxes, fully charged and with nice shiny paperwork. Much better.

*For I am, just occasionally, staggeringly organised like this.

**For, alas, even when I am staggeringly organised, things have a tendency to go wrong.

Variations on the theme of brown.

This is the view I get on Tuesday evenings now. Mog and her six, working together. It's beautiful - one writes in her notebook for her, another checks her answers, occasionally they call over to me for information they need but more often they check with Mog herself. They danced this week, and choreographed their dance so Mog could join in with kicking legs and her air-guitar hands. And Mog won the weekly Brownie Shield for joining in so well. Lovely.

A less beautiful brown is the brown I'm washing out of everything; she is having a problem with her Movicol these days and I'm not convinced it's quite fright for her any more. For which experienced carers may read, I'm fed up of having to hose her down from neck to knee on a daily basis, and the whiteness of her school uniform is starting to suffer.

A nastier yet brown would be one of the many colours inside Little Fish's Gastrostomy. We had an appointment with the surgeon yesterday, who was unfazed as the brownish yellow slug of pus shot out of the stoma towards him with the removal of her button. He was sympathetic but unfazed too by the blood curdling screams Little Fish uttered as he attempted to silver nitrate the excess tissue around the site. And pointed out as I winced, that she had started the screaming before he touched the stoma at all, so it really wasn't pain related; a fact borne out by her ability to switch off the screams instantly as he stepped away, and to recover herself.

Next step; find someone to help silver nitrate it at home or face the prospect of having to drag her back to hospital once a week until it's gone. Fun times. I'm thinking the hospital itself may be willing to send someone out on home visits; if she screams as loudly as she did this time then the anxiety levels in the waiting room are likely to be growing ever higher. Although I suppose with scared children running for the exit, the waiting times for the remaining brace ones might come down to something less than the 90 minute delay we had to sit though. Which in itself wouldn't have been dreadful, if another child hadn't already selfishly discovered an effective way to beat the queue puked all over the floor, chairs and play table.

Little Fish in a brown study all the way home; thinking deeply and not able to concentrate on anything minor like staying awake or eating tea. Or following her own evening routine, meaning I'm reasonably confident there will be brown studies of a different kind to deal with this morning.

Three cats ready to welcome us home last night; all three immediately raced through the door into the pouring rain. Not normally an issue; Goway can take care of himself, Grolly will run around for a few minutes then be lured back inside with the promise of yummy treats, and Gotcha generally runs down the ramp, realises it's all cold and wet, and then bounces back up again. Not tonight. He clearly heard the call of the wild, and decided to chase around the cul-de-sac, under cars and over hedges, bouncing and running and generally celebrating his freedom.

So far, so annoying, but nothing more. I shook his giraffe-on-a-stick which normally has him racing back to kill and destroy. nothing. I shook it again, and a Little Fish heard him cry. Jingle jingle, followed by a faintly desperate meep meep meep. Repeat ad tediam. Heading out into the rain I went to investigate the cries. And found that he had wedged himself between a fence and a hedge. The way out was easy, but involved retracing his steps through our neighbours' garden and moving away from the house. This he was too scared to do, wanting desperately to come back inside and have food and fuss.

Making a long arm, I hauled him through a gap in the hedge, where he clung to my shoulder in a desperately pathetic "I'm just a tiny kitten and it's a great big scary world out there" manner which would be taken more seriously if he weren't so big and heavy my shoulder was struggling to take the strain. He was however terrified. Longhaired wet muddy cat with terror induced incontinence; a whole new layer of brown to deal with.

So for the cat experts out there - I tried bathing him but he wasn't having that. He consented to much wiping and pulling and trimming with scissors, but I wasn't convinced our Original Source Lime showergel was the right thing to use (so didn't!) - but for the future, what's the best thing to do? As it is I've now got a newly ventilated cat with gret bald patches. And despite my best efforts and his, we've still got the odd brown bundle clinging around his tail and back legs.

And now I've got an "I waking up, Mum, MUM" in my ear so I had better go and start the day.
Tia

The sense of lethargy in this house is overwhelming

Wake up, blow nose, cough, go back to sleep.
Wake up, wipe someone else's cough, go back to sleep.
Get up, get the girls up, get feeds and meds all set up, music and DVDs on, head back to bed.
Be smug about having managed to get everyone dressed and drugged.
Bring littlest one into bed, cuddle up together, go back to sleep.
Find some energy, cook lunch, do lunch time drugs and discover that although larger one's feed was set up, I forgot to turn it on (five hours earlier).
Go back to sleep.

Realise new cleaner is coming next week and house is suffering, decide to tackle bathroom as smallest and therefore hopefully quickest room to clean. Emerge, several hours later, to discover Little Fish has been mimicking my efforts in the sitting room. Only, where I have been sorting items into rubbish, recycling, and really-need-to-find-a-better-place-to-store-that piles, she has been following the "when in doubt, pull if off the shelves and out of the cupboards and stir it around on the floor" method of cleaning.

Attempt to begin process of cleaning sitting room. Get into ridiculous shouting match with Little Fish over her desire to put the kittens in a box and pull it around the floor as opposed to my desire to put paperwork in the box and burn it file it away. Realise this is madness, settle for clearing the settee, and, as a compromise to the cleaning ethic, hoover the crumbs out from under the cushions.

Sit down, exhausted. Realise that although I spent several hours in the bathroom cleaning, I didn't actually clean the floor, sink, bath, or loo. Decide I might not actually be fully functional just yet.

Make macaroni cheese. Eat lots, watch Little Fish do the same. Remind Mog she can eat again once she's gone 24 hours without needing suction - I'm not hoovering cheese. Not after the hummus incident. Begin the getting the girls to bed process. Watch Little Fish vomit the macaroni cheese. Put the girls to bed.

Debate the wisdom of clearing the sitting room which is now officially way past disgusting. Decide instead to sit down again. Take phone call from my mother, who informs me that the adult care team in this county are continuing to attend clients who have swine flu, unlike the children's care team, who have refused to cover our visits this week. Discover I wasn't actually angry about having no care with all three of us ill until I had heard that. Shelve fury as it burns unnecessary energy.

Consider standing up to go to bed, but decide to rest on the chair for just a little while longer first...
Tia

Ups and downs.

Mog's new head and backrests arrived this morning. I think it's safe to assume she likes them. Instant growth for her; she sits three inches taller now; head gently cradled, shoulders supported, sides snuggled in no longer scrunched and twisted. A sign of comfort; she was asleep in her seat by the time we had finished tweaking the chest harness.

That's the up; the down would be for Little Fish. A phonecall to let us know the local education authority have refused to fund the full support she was promised (and needs) for school next year, leaving her short by one hour each school day.

A call from our nurse giving us a choice of antibiotics for her latest gastrostomy infection; both ups and downs here. Bad that she has an infection, good that it is not on this occasion MRSA. Good that it will respond to antibiotics, bad that she will therefore have an antibiotic tummy for the end of term. And then a late phonecall from the duty doctor; bad that the fax did not come through early enough to get treatment sorted out to start tonight, but good because I was able to request a bottle of oxybutinin at the same time, having realised too late that we have no spare bottle and the present one will run out in the morning.

And then an evening out for myself, an up. A barbecue in the pouring rain; probably a down. Some beautifully marinated chicken; definitely an up, but another late night, and the second of three nights in a row out of the house, probably a down as far as Little Fish is concerned.

One nice up though; training for the new school staff all going ahead as planned, the school still seem to be keen and willing to learn. And, in a neat piece of continuity, one of the staff trained today to meet LF's needs is the daughter of LF's present nursery nurse, and will be Mog's Brownie Guider in September.

More ups than downs I think; it has felt like a good day anyway.
Tia