Saturday, 31 January 2009

Picture post.

And people wonder why we need a bigger vehicle for just the three of usThere are two children in there somewhere, I promise!

Inside the gates:And the view from the windows of my flatSpot the child.Always nice to see her when she can't see me. To watch her having fun. Important, when if I believed her, I would be under the impression that she was pining for me every moment of absence.

And a sight not seen for many weeksMog asleep in a bed. She managed all four nights there, propped up and wedged in place, supports behind her head and under her chin, but actually in a real bed. Her feet are very pleased; they were starting to swell.

Even better - she's managed to keep it up at home. That too-small beanbag is working overtime as a too-large backrest, and she just about squeezes into her little bed. Roll on Monday and I'll be chasing up her new one.

Meanwhile, in our absence, the cats seem to have decided to get along well with each other.
Spot the difference!
I'd like to know which spot is pole position though (oh, and where exactly I am supposed to fit).


Friday, 30 January 2009

Code Brown - the revenge of the hospice

Helen House is about ten miles from here, a twenty minute drive. Today on leaving though, we had a trek to the farthest outposts of the county for a ROSY morning, then lunch with friends before coming home. So the decision by the hospice staff to feed Mog extra Movicol late last night really was a touch diabolical.

Mind you, I have no one other than myself to blame for the widdle puddle which appeared under Little Fish's high chair at lunchtime*.

And now we are home. I have photos, but the cable is elsewhere. I have stories and anecdotes and wild witticisms. And no energy - yes I know I've just had a really restful four days, but right at this precise moment in time "you can have no more respite until after May 1st" is shouting louder than "you have just slept well for four whole nights in a row".

Tomorrow the balance will be restored.
I hope!

*I blame myself for not changing Little Fish before this happened, I was not the widdler. I was however the one who spilt the Diet Coke, leaving a much larger puddle beside the smaller, drippier widdle puddle.

Thursday, 29 January 2009

A beautiful day

Breakfast in bed. An uninterrupted bath. Morning cuddles with clean children.

A friend. A pub lunch with nice food. An afternoon spent browsing bookshops.

More cuddles with girls. Cake with candles. Cards and brown paper packages tied up with string.

Sitting quietly watching children falling asleep. A mindless DVD watched in bed.

These are a few of my favourite things.

Tomorrow reality returns. But for today, peace and rest and refreshment.

Goodnight and God bless.

Wednesday, 28 January 2009


Today I walked down Cowley Road. Alone. Not pushing a chair and not having to make conversation with anyone. I browsed the secondhand bookshops, I avoided a man trying to sell me okra, I collected money from the bank. And then I came back to the house and sat with my little girl as she played with dolls and a play kitchen and the craft supplies. And then I sat with my bigger girl and snuggled her to sleep.

Not very exciting perhaps, but a dry run for tomorrow when I getting spend a whole full day with a dear friend. We're off to find old Inklings haunts. And to sit and walk and chat and walk and sit. And chat. Fun times.

Tonight I had to do what I have been avoiding for a while, and update the girls' DNR forms. They are massively overdue as I have refused to fill them in when the girls are around. Not because I want to hide things from them but because there are ways and means of discussing these things. And having a child on my lap as I decide what measures should or should not be taken in an emergency is not my chosen means of doing it.

So we fixed a time when they would be in bed, and I geared myself up to facing an overdose of reality. We did the first one very easily, a couple of minor alterations and a shock for the nurse who had somehow not picked up on all the complications. And then I was ready for the next. A much harder one this. And one which has been waiting several years. didn't get done. They won't accept I have the right to fill it in unless they have a piece of paper telling them I have that right. So it will be shelved, massively out of date and unsigned, for another few months. I just hope we don't need it in the meantime.

Doing the thing is hard. I wonder though if the decisionmakers realise how hard not doing it can also be?

And then I walked back down the corridor and listened to two girls sleeping sweetly. And came back upstairs and had a glass of wine and read a book and enjoyed the reassurance that someone else would be doing the night shift again. I could get used to this.

Tuesday, 27 January 2009

Day two in the Helen House

11.45 pm.

Little Fish is asleep. Earlier, a small fight broke out between LF and her carer when it was discovered that Upsy Daisy pyjamas were not yet dry. Alternatives were not acceptable, and LF was late to bed as she waited for them to dry.

This morning Little Fish found a selection of dolls to play with, painted a picture and her jumper and liberated a box of stickers from their drawer.

Mog is also asleep in bed. A chat with the night staff revealed that she had had the best night they had ever known last night, and hope has been building that once her profiling bed appears at home she will be able to repeat the experience. Earlier today Mog spent time in the therepy room having an aromatherapy massage.

Both girls were visited by the in house school teacher and by a physiotherapist. They also both had baths and enjoyed going into the garden.

Tia is hoping this is slightly more interesting than channel4's version but is not convinced.

Earlier today Tia enjoyed waking up slowly and then drinking coffee in bed. She then spent the day with her girls, enjoying their company as others did the hard work. She particularly enjoyed handing soggy children to others to be made clean. Later on, Tia escaped the House for a couple of hours and went out for supper with a friend. This was quite possibly the highlight of her day.

Tia came back to the house where she held a conversation with the night staff before coming upstairs to her flat where she had a glass of wine and readxa book, revelling in the fact that she will not be disturbed in the night nor need an early start in the morning.

To evict Tia and the girls from the house do not call any numbers. All three will be evicted in good time on Friday.
Until then,

Monday, 26 January 2009

Aaaand relax

I appear to have found a way to encourage lurkers to post; thanks to all of you.

This should have been a photographic blog, but the computer is not inclined to share.

So instead I'll tell you that Mog is asleep, in a bed not an armchair, for the first time in weeks. Hurrah. She may not last the whole night, but I don't care; she's doing it for now - nicely propped in a profiling bed. I hope her new bed gets to us at home soon.

Little Fish is nearly asleep, occasional mutterings of "I bit sad Mumma, I bit hurty Mumma, I not going to bed I not tired" are fading slowly.

And I have flat in the hospice instead, not over the road, a flat with a bath not a shower. So if I want to sneak downstairs and check on Mog's progress in her bed overnight I can do so, and in the meantime, I am going to enjoy a nice deep bath without worrying that the taps running will wake a sleeping child or disguise a drowning cough.

Thanks again

Sunday, 25 January 2009

Foot in mouth disease

I was having a conversation this morning (not the conversation I was having with you, K, in fact not the conversation I was having with any of you Ks, just to be clear about that!), and just mentioned how much I was looking forwards to Helen House. We had been talking a little bit about how Mog had been ill, and I said I was looking forwards to getting her checked out by the doctors there, as well as having a break. And back came the response "sounds like you've bitten off more than you can chew with taking them [the girls] on then."

I didn't really know how to respond to that. I don't think I was complaining. And even if I had been, I'm not sure how I was supposed to reply - "Oh you know what, you're absolutely right, I'll send one of them back shall I?" It's odd, because I thought I was being enthusiastic about the break. And about the fact that Mog was getting better. I ended up saying that having just the two girls was much easier than having had three, but that felt fairly disloyal both to Goldie and to the baby who was my last number three. And then someone else came to say hello, and foot in mouth woman went away to annoy, upset or bewilder someone else.

So, for the record, and in case people reading this are also wondering whether I have somehow bitten off more than I can chew, I'd like to say this:

I love my girls. I love caring for my girls, I love being given the chance to parent my girls, and I love my life which has these girls in it. I didn't give birth to these girls, but they are nevertheless my daughters. And I love them with a mother's love.

My girls are fairly substantially disabled. They have complex medical needs. But I don't love them any the less for that; it doesn't mean I somehow consider them to be less human, less lovable. It does mean I spend a lot of time trying to juggle health needs, trying to unpick medical issues and trying to keep on top of things. But, although I don't enjoy seeing the girls unwell or in pain, I do actually quite enjoy teasing out solutions to their problems. It is really satisfying when I can figure out that something as simple as a scarf knotted around the neck will support Mog's head well enough for her to enjoy taking part in life again. It is a marvellous feeling realising that a new medicine is actually doing what it is supposed to do. It's also tiring, frustrating, frightening,and occasionally heartbreaking, when there are things I can't fix, can't change, can't get anyone else to take action about. More than I can chew? No - but definitely enough to make my jaw very strong!

Most of all though, I am a mother. I shouldn't have to explain that to people week after week, year after year. I don't have patients, I don't have charges, I have daughters, I have children. Children who, just like your own children, go to bed at night, go to school during the day, have likes and dislikes, are capable of being naughty and of enjoying a good joke, two small human children.

It is true that Mog has two mothers, and a father, and I am only 1/3rd of her parenting team. But that doesn't make me 1/3rd of a parent; it means she has three parents. If a couple have children, is the mother only half a parent because the father is also present? Little Fish is my adopted daughter, I am her only legal parent, and yet still people talk to me as though I am caring for her on behalf of someone else.

It's not just annoying and sometimes upsetting for me, it's also unsettling for the girls, especially for Little Fish. She is super-clingy at the moment; people querying my ability to parent her are not going to increase her confidence and sense of security.

I am a mother. I'm not some kind of superwoman. The things which upset you also upset me. Watching my child be ill is just as upsetting for me as it is for you. True, I get used to some of the things we deal with every day, but there's a fair amount I deal with with the help of a heavy dose of denial. Don't be taking that away from me unless I ask you to, please! And please do think about how you would feel if someone asked you the questions you ask me.

I'd also like to say this:

We have a good life. Whether it's small, every day things, like doing the washing up or watching the Teletubbies, or bigger things like exciting holidays and fancy sensory equipment, we aim to make the most of life. We aim to live deep, making the most of what we have, where we are, when we can. If Mog only has half an hour when her eyes are open, then Little Fish and I will try to make sure that she has good things to look at in that half hour. If Little Fish can only wiggle freely when she's in the shower then we'll give her a shower whenever she wants one. And if I want to eat large numbers of Whispa bars then I will!

Chew on that!

Saturday, 24 January 2009


A child who falls in love with a "bockle of beads" in a shop will not be mollified at home with a plastic tub filled with macaroni.

A child who is four foot long will be too long to lie on a beanbag that is three foot long. Even if you have spent half an hour ramming the beanbag into the cover, even if it is a brand new beanbag, and even if it looks really comfortable.

I had the following conversation earlier.
"It raining, Mumma?"
"It raining, Mumma?"
"No, it's not raining"
"It raining, Mumma?"
"No, it's not raining, listen to me, it is not raining. Now find something else to talk about"
"It not raining Mumma?"

Combine this with the ever popular two-question call- "Wot doing, Mumma?" followed by the inevitable "Why?", and obtain one rather stressed Mumma. She's also taken to calling me by my first name, which is surprisingly annoying.

Roll on Monday. Monday we are booked into Helen House. Four whole nights of sleep, with someone else working the nightshift, someone else doing the boring bits of caring whilst I get to enjoy the positive bits. Someone bringing me endless cups of tea as I sit and cuddle Mog, if I like (and someone else distracting Little Fish to enable this to happen). Someone else answering the endless round of questions and finding neverending supplies of dolls, paints, glue, mud.

And someone else drawing up the medications and sorting out the feeds. I think that's my least favourite caring/nursing task (except possibly emptying the canister from the suction pump). Yes, incontinence isn't always fun to deal with, but it's generally close contact with a child, and I like that. Dressing changes and clothing changes get tedious, but it's still contact with the child. Dealing with seizures and breathing stuff gets scary at times (and worryingly tedious at others; should you really be that relaxed about something which could at some point kill the child?), but the treatment involves close contact with the child. Again.

Drawing up meds though, and washing up syringes, is purely mechanical. It's something which could be done by anyone. It's tedious, time consuming, important, and takes total concentration. Mog now has two tablets which are almost identical, and another one which closely resembles Comeback's kidney pills. Little Fish now has a couple of little brown bottles very similar to some of Mog's little brown bottles. And they both take different doses of one of the same medicines. It's not something I can do in my sleep. I can change a soggy bed without opening my eyes properly. I can roll a small child over without waking up. But it takes concentration to work out which bottle of cherry red liquid you are supposed to be giving, which sickly sweet clear syrup is the baclofen, which the lactulose and which the oxybutinin. It takes careful hand-eye coordinationto shake the powdered contents of a tiny sachet into a syringe to be mixed with water.

It doesn't take long. But it is monotonous - and yet that monotony is dangerous. Start giving drugs on autopilot and you run the risk of giving them to the wrong child. Or making other mistakes. So, for me, the luxury of Helen House is having someone else draw them up and bring them to us on a little tray. With a slice of cake for me. I don't mind squirting the drugs up a gastrostomy tube - again, that's connected to the child, it's closeness and it's care. It's the mechanics of getting the drugs out of the bottles. Cleaning the bottles. Assessing the remaining quantities in the bottles and chasing up repeat prescriptions. Admin.

Ironically, this same situation is one of the most stressful ones about being in hospital. I push hard to be allowed to draw up our own drugs when we are there, and manage to get this happening about half the time. The rest of the time the hapless nurse on duty has to face serious amounts of crossquestioning. Which turns into seriously cross questioning when the mistakes are discovered.

I keep trying to write something here that's coherent and vaguely interesting. And I keep writing pages of whitter which bores even me as I write it. I think this is a sign that I should, perhaps, go to bed.

Night all

Friday, 23 January 2009


Note to my future self, lest I forget:

1. Midafternoon baths are indeed a good way to spend that miserable hour when a tired and achey toddler refuses to nap. However, when small child wishes to wash spoons in the bath, you should consider the holding capacity of cups and saucepans before offering these as a substitute.

2. When the floor and changing bench are flooded, and should you fail to consider point one, they will be flooded, it is probably better to grab anything at all to mop up with before trying to move small but surprisingly solid child.

3. If you decide to allow child to drip dry whilst sitting on the commode, strong consideration should be given to drying said child's rear end first. Slippery bottoms and smooth seats do not make for a safe combination.

4. It may well be true that getting the child to blow bubbles will facilitate bowel movements. However, leaving the child with a large bottle of bubble liquid will lead, not to major improvements in bubble blowing skills, but to small child with aforementioned slippery bottom skidding off the potty and across the bathroom floor, landing face down under the basin clutching the towel rail.

5. Small wet children coated in bubble mixture are extremely slippery. Picking one up will indeed be like trying to pick up a bowl of jelly without the bowl.

6. One small wet slimy child can combine with a slippery bathroom floor and skate and slither surprisingly successfully.

7. It is important not to get distracted by this new mobility skill. Yes, bubble mixture may have future applications as a physio tool (but probably in the summer and almost certainly in a paddling pool, not on the bathroom floor), but this is not what should be uppermost in your mind when you reach to pick up the small child.

8. Repeatedly grabbing at different assorted limbs as the child you pick up slips out of your hands, giggling, may well not harm the child, but will almost certainly wrench your back.

9. Finally, if you must repeat this exercise at some point in the future, please consider rinsing the towels you did eventually use to mop up the industrial quantities of bubble liquid before you toss them in the washing machine.

That is all.
edited to add
10. If you decide to plonk small child into her high chair whilst you blog tidy up, please take steps to ensure the packet of dried macaroni is out of reach. Thank you.

Thursday, 22 January 2009

Thursday Strikes Again.

It took four hours to get Mog into a position where she could breathe comfortably last night. Annoyingly, I had just finished the DLA form where I claimed it took up to 3 hours to get her settled in the evenings. Such is life.

This morning, I waved Mog off onto the school bus, and had just finished nuking a bowl of pureed spaghetti for Little Fish's lunchbox when her preschool teacher rang to cancel preschool. Ah yes, it must be Thursday. Never mind, I was down to be a Lady Who Lunches later on, I can just be a Lady Who Lunches With Small Child. It's only a minor difference, and I'm sure the coffee shop will be happy for her to eat her pureed spaghetti - a dish unlikely to feature heavily on their menu.

The cats inform me that we have run out of cat food. I inform them they can eat what they've got and like it, and Goway starts picking holes in his fur. I promise to buy more when we go out, and sit down to check emails before washing my hair. All this takes rather longer than planned, and I realise that I have just accidentally fed Little Fish her entire day's feed in three hours straight rather than pausing after 300mls. Ooops. I change her and burp her and clean her up, and we are off.

We leave the house rather early to avoid having to look the cats in their eyes to buy more cat food and stock up on a few other essentials before meeting our friends. I discover a box of catfood in the bus (don't ask me why), and dole a little out to tide them over before we go.

Arriving at our destination I make the always pleasing discovery that whilst I have Little Fish's lunchbox and school bag, I have no purse. A search of the bus reveals £3.07 in loose change, half a dozen wrappers from suction catheters, and a bumper pack of chocolate buttons. Score Oops! I have good friends - thanks guys!

Coffee, cake, and the ebb and flow of life with our children means conversation runs simultaneously so deep we almost drown and so shallow we can't stop laughing.

Hospital next, where Little Fish is measured for a post-hip op brace. We've called this brace a Toronto brace, since that is what the surgeon calls it. The orthotist informs us this is in fact a Maple Leaf Brace. This would explain why googling the Toronto Brace was unhelpful before Mog's surgery last year.

We get to the clinic with ten minutes to spare before the appointment. And find ourselves seated beside an elderly woman slumped in a giant hospital "don't even think about stealing this it weighs a tonne and is ridiculously uncomfortable and can't be pushed in anything approached a forwards direction" wheelchair. "Oh please, oh please, oh please" she mutters, "I am too big to fit into an ambulance, oh please, oh please, oh please no no more treatment". And holds her hip, which is taking her weight as the chair is too large for her to sit properly in "Oh please no, no more, I will be good", and then her nurse turns up and comforts her for a brief minute before calling once again to beg the Patient Transport service to send the ambulance quickly. She is told the Ambulance will be there at three, and returns to hold the woman's hands, whispering words of comfort and attempting to persuade the woman to talk about happier times. This fails, the woman is distressed to realise that she cannot remember why she doesn't live in London anymore. And then, thankfully, the ambulance arrives to take them back to the care home - and it is the ambulance which was parked across the road and had been there for the twenty minutes before they turned up.

Our turn, Little Fish is measured, and she will probably be big enough for a brace by the time she has her surgery. This is good news; if she can wear the brace she will need it for just six weeks. If she needs plaster, it will be three months.

And then home, and home in plenty of time to take Mog to Rainbows.

Hell is very possibly an eternity spent containing thirteen six year olds past their bedtime and high on sugar. And that's all I'm saying about that.

And now Mog needs me. She's currently holding four sachets of movicol (bowel dynamite). And counting.


Wednesday, 21 January 2009

An Odd-ish kind of day.

Today the postman brought a large brown envelope. Inside it was a smaller brown envelope. And inside that was a note from one of the girls' birth relatives - a relative we've never met or had any communication with before. It was a lovely note, not long, but hopefully the first of many.

And then there was a knock on the door, and one of the carers who was working with Goldie when Goldie had the accident which led to her death was standing on the doorstep. She didn't want to stay, she just passed me a photograph and ran away again.

It's a lovely photograph. Not a beautiful photograph; Goldie could be incredibly photogenic but she could also become an utter ragamuffin at the merest hint of a click of a camera shutter. This is one of the ragamuffin shots. But what makes it special is that it was taken by one of her carers in the few weeks she was living in her new home. Up until now, apart from the bloated and ventilated post-accident shots, I have only had one photo from that time. And it's not a great one. This one is a scruffy, scuffed, wild-haired, Goldie. A Goldie sitting on the floor in a position that would have the physios weeping, but she is holding toys and smiling and laughing and happy. And she's sitting on the floor - someone took the time to realise she could, and hoisted her out of her wheelchair. A Goldie wearing clothes I've never seen before, clothes which someone else took the time to take her shopping for. A Goldie wearing the rainbow bracelet we bought together from a shop on an island off the coast of Wales. A Goldie who was happy and well-cared for. I take back my earlier statement - it is a beautiful photograph.

And it's a precious gift, and I'm sure delivering it took a lot of courage. And I'm very pleased to have it. But I wasn't expecting it, and I wasn't prepared for it, and I'm not quite sure what to do with it. It's an A4 picture so not small. And I wish I'd thought to ask her if she had any more before she disappeared again. And I wonder if I should be the bigger person, and offer copies to her relatives. And I don't want to. All of which is a little weird to think about, so I think I'll try to concentrate on the fact that I have an extra photo of my precious girl and be happy about that.

And then news about my GodDaughter, Eve.

And then I had a slew of phonecalls, and couldn't think about anything at all except the immediate here and now, which was probably useful. Appointments rearranged, new solutions for new issues, new help and new progress. And Little Fish choked on a chocolate button in the middle of her feeding therapy programme whilst being fed by an assistant as I had the actual speech therapist on the phone arranging an appointment with an additional therapist for March. Which I suppose was helpful as it demonstrated her problems nicely. But we were hoping that she'd made such progress over the past few weeks that she could now manage things better. And she can't.

The phonecalls concluded with a conversation with my grandmother. Who informs me she is buying a Moped. I really hope she means a mobility scooter. I'm pretty sure she does, but I hope the salesman also understands her! The world is not yet ready for my Grannie on a Vespa.

It must be bedtime.

Tuesday, 20 January 2009

A Blue Peter Hensinger

I got tired of holding Mog's head for her on Sunday, and wedged it with a rolled up scarf. Her Sunday School teacher came up to me and told me she didn't know Mog could sing, she hadn't heard her before. She ate a lick of bread sauce and one of custard at lunchtime. And she kicked me at bedtime. Yesterday, I sent her to school with the same rolled up scarf. And she opened her eyes, and joined in with the lesson. And kicked the bus driver.

Today we went to the wheelchair clinic, and they have ordered her a Hensinger Collar. Which looks to me to be pretty similar, but without the ability to unroll at crucial moments. Amazing what a difference having her neck supported makes - even when she's not obviously struggling to breathe I suppose it must have been more of an effort. I do hope this makes things properly better for her - would be great if something so simple solves so much.

And, because she somehow wriggles in everywhere even if posts are most determinedly not about her, a photo of Little Fish from yesterday once I'd worked out how to immobilise her let her do the washing up without sending it flying.
It's a serious business, cleaning up after Mumma.

She sat cleaning the spoons and forks, I cleared up the worst of the rest of the house. This morning our cleaner came, and I went out and hid in a carpark with a cup of coffee and an iPhone. I then collected the girls from school and went to the wheelchair appointment, taking the last parking space in the whole carpark. We came home later to a house that was gleaming and sparkly with all surfaces clean, all floors clear, all toys pushed to the edges of the rooms put away tidily. And Little Fish elected to play with a puzzle and sit quietly with me to do it. Things were looking good, strong possibility of a house still clean and tidy by bedtime.

And then our friends called in, and their children and LF emptied the ball pool.

They did all have fun though. And sane adult conversation was good too.

Monday, 19 January 2009

I give up.

I just tipped my nice hot lemsip into my cutlery drawer.

And emptied it, dripping, into a bowl of hot soapy water. And made the mistake of letting Little Fish help wash them up.

Two minutes later I had this
on the table and a flood of hot soapy water all over the kitchen floor.

I went to get a towel, and discovered Little Fish had been ahead of me.
Is it bed time yet?

Sunday, 18 January 2009

Spot the mistake.

When we got to church this morning, Little Fish's wheelchair looked like thisI'm impressed that we made it, really. She didn't tip up once. We walked back through the carpark, no sign of the missing item (worked it out yet?). We walked home the same route we'd walked in, and again no sign. We came home and searched the house incase we'd somehow managed to leave it behind altogether, but no luck there either.

Last week's story was about the woman who lost her treasure, tidied and swept her house until she found her coin, and then threw a party to celebrate its return. I'll throw a party for anyone who finds this; until it turns up Little Fish will be confined to her Lomax which really doesn't have the same panache. Or stability - in fact I'm sure there was a recall notice out last month. Today's story was about the man who found buried treasure in a field he was digging, sold all he had to buy the field, then rescued the treasure. I can't promise to give you all I have, but I might bake a cake for anyone who finds it.

Side note, and unrelated to our missing item (noticed yet?), I wonder what the other 9 coins felt like. Or if coins don't have feelings, the 99 good sheep. Or the son who stayed home and didn't waste his inheritance on the high life. Always seemed a little unfair to me. "You work hard, you do as you're told, you get on with things, you don't rebel, now go and throw a party for the one who did". I'm probably missing the point.

Back to the chair; Little Fish has been very bothered about this. So we rescued the Lomax from the garage, and dug out a bowl of water and cloths to clean it up. Little Fish was well prepared. It's fun being three. We cleaned and we scrubbed, and we scrubbed and we polished, and we got rid of the cobwebs and mould and most of the rust, and we have a chair she can take to school tomorrow.

Exhausted, we sat down together for a bit before bedtime. Little Fish found the camera. I'm not convinced she's improving.
But I might steal it for a profile pic somewhere.

I might also think about contact lenses.

And then to bed, and "pray Mumma, pray". So we prayed, "Thank you God for church and for lunch and for Grannie and Grandad and chocolate buttons my very favourite". And then a small addendum "and God my wheel please". So if anyone fancies answering a small child's prayer, could you tell me where her missing wheel has gone?


Saturday, 17 January 2009

Washing the blues reds away

So, two weeks ago, I bought myself a rather nice, smart, soft, beautiful cardigan. This cardigan actually (and I paid quite a bit more than that, even though it was officially "on sale"). It's pretty. It has thistle-y things on it. It's snuggly. And it looks fairly smart. Oh, and it's warm.

Somehow, it got included in the wash I did this morning. A white wash, naturally. I now have beautiful pink pants, vests, bibs, socks, tshirts, and school uniforms. Oops.

That, though annoying, is just one of those things. I haven't done it for a while, it was probably about time I did. Mog's white long sleeved tee has actually come out a very faint marshmallow; it's very pretty. And her uniform polo shirts no longer look dribble stained - just pinky-orange. That is also possibly an improvement. I should probably get the bleach out.

But oh, my cardigan. I mourn.
Little Fish has a nice new felted wool jacket. Much too nice for a muddy toddler.


Friday, 16 January 2009

New Liver

I'm sure Bethany and her family could do with any prayers people have spare right now.


UPDATE here. Bethany has come through surgery and now the road to recovery begins.

Wednesday, 14 January 2009

A Day in my Life

It's the 14th again, and visiting Little Jenny Wren's site reminds me that it is time for A Day In My Life.

I had another couple of posts mulling about but I shall shelve them for now and blog our day for you.

We started with an inadvertent lie-in; for some reason my phone was on silent so instead of being woken by the alarm I was woken by the carer hammering gently tapping on the front door to be let in.

I dragged my weary body tiptoed gently to the door to let her in, then retreated to get dressed myself as she gathered clothes for Mog. Mog meanwhile was sleeping peacefully, so peacefully that I had to check for myself she was actually breathing. She was. Beautifully, calmly, silently, without struggling. So we mutually agreed to leave her to sleep, and our carer instead helped Little Fish with her breakfast and then into her clothes. I fought the urge to go back to bed and entertained the carer by insisting on two spoons of coffee in my mug.

Mog did wake up before the carer left, so we threw some clothes onto her too, having made the decision that she would not be going to school today.

An almost peaceful hour followed; Mog went back to sleep, I washed my hair, and Little Fish asked me what I was doing about six hundred billion times, and then asked me why six hundred billion and one plus infinity times.

And then we loaded up the bus and headed off to hospital for an outpatients appointment. Yesterday, different hospital, Little Fish and I ended up parking on a muddy verge as no spots left in the carpark. Today, no spaces in the disabled parking zone, no spaces in the children's hospital carpark, but thankfully only a fifteen minute wait to grab a space in the neuro carpark, and only a 1 minute indoor walk between that and the children's hospital.

Up in the lift "maybe we might be having time to play, Mumma?" and much to Little Fish's pleasure, the clinic was running late enough that we were nicely in time for her to ignore all the toys and insist on being bounced on my lap holding half an old telephone set.

And then a weigh-in - by the same nurse who weighed her yesterday at the orthopaedic hospital - and then finally time to see the paediatrician.

Yesterday one of the doctors looking at Little Fish listened extra hard to her chest, and got that look on her face. You know the one; it starts with a "mm hmmm" and moves to a "wait what?" and then goes on to a "hmmmm don't remember reading THIS in her notes" and then a panicked "oh what do I say to the parent, she's sitting right here watching me, must be reassuring, oh too late she knows something's wrong now right here goes." And then with a bright, caring, smile, the doctor said "Has anyone told you she has a heart murmur?"

No. No one has thought to mention that before. Actually, I'm pretty sure no one has picked this up before; it is the sort of thing which would be listed on adoption medical papers and it wasn't. And given the number of people involved with Little Fish's medical bits and pieces, the fact that it has never been mentioned quite possibly means that it wasn't there before. Or that everyone assumed someone else was doing something about it.

So, today the paed had a good listen for himself. He listened to different parts of the heart from different positions on LF's chest with LF's arms and body in different positions. And then had a bit of a "Hmmm" himself. The good news is, he isn't really worried, and apparently if Little Fish were an ordinary child her age he would just want to monitor it periodically with the expectation that she would grow out of it by the age of 5 or so. But of course Little Fish is not an ordinary child, and her body doesn't work in the same way as other children's do, and in addition she is now waiting for major surgery. So he has referred her to a cardiologist. Ho hum.

This means that between the two girls, we now see two neurologists, one neurosurgeon, two respiratory doctors, one orthopaedic surgeon and one spinal consultant, one urology consultant, one general surgeon, and are now awaiting appointments with one ENT consultant and one cardiologist. Add in all the many nurses and thank goodness we don't need to keep seeing all the social workers too!

So, appointment over, we have time for a quick bite of lunch in the atrium before heading back towards home. For some reason, it wasn't popular this lunch time. Someone had beaten us to all the chocolate and almond pastries, perhaps everyone else shares my opinion that nothing else is worth eating from there.

Little Fish did not share my opinion, and enjoyed a sandwich in her chewer.This is a clever little device with a hardy mesh bag attached to a tough plastic handle. All finger foods can be put into the bag, and she can then suck and chew to create her own purees. It isn't pretty to watch, but it is excellent feeding therapy, and she prefers it to having to eat cold mush everywhere we go. Hopefully by the time she is old enough to be embarrassed about needing it she will have made enough strides with her therapy to be eating ordinary food again.

Mog and I then dropped Little Fish at preschool, and walked out, her wails echoing down the corridors once more. I wish I knew what this was all about. She was absolutely fine about being left last term. After Goldie's inquest she was quite upset and feeling a little insecure, but she seemed to have settled down into school and preschool again a bit more before the end of term. And now she is worried all morning about the prospect of having to go. "I not go, Mumma, I too tired" "I too sad, I a bit hurty" "Maybe you and me stay here together, Mumma?" I know she isn't of statutory school age, I could take her out of both settings and keep her at home with me. I know too that I could go and stay with her in both places. But, 30 seconds after I have gone she is perfectly happy - not just resigned to her fate, but happy. And when I pick her up she's delighted to see me but again not superclingy and overwhelmed, just pleased I am back. So I really don't know what's going on there.

However, having waited until I could hear her being happy again, Mog and I came home and snuggled up together to watch her copy of "The King and I". Mog evidently felt it was quite relaxing.And then it was time for a cold walk back to preschool to collect our Little Fish.

Back home again, and time for our speech therapist to visit, bringing with her an assistant who is going to carry out a feeding therapy programme for Little Fish for the next six weeks. Lots of blowing bubbles, making faces, and licking chocolate spread off her lips, and then time for them to go and for us to think about tea and pyjamas and bed.

And so they did, and so we did, and then Little Fish was settled . And then I had some food, and Mog had some music, and now Mog is also settled in her chairand has that "leave me alone I need to sleep" look about her.

She's not the only one, and that is our 14th for this month.

Tuesday, 13 January 2009

Tuesday Blues

It didn't get better today. I started to blog it but it started to bore me, so I'll take you on a trip to some of my happy places instead.

This makes me smile.

This makes me laugh.

And this video from the summer, and this from our April holiday make me remember what excellently wonderful girls I have, how lucky and blessed I am to know them.

And then life probably isn't quite so bad really.

ps - does anyone know how to re-post a video to blogger without having to upload it a second time? I know Picasa store the photos but where do videos go and how do I recall them?

Monday, 12 January 2009

We haven't had the best of days.

Little Fish woke up this morning saying "I not go school today too sad to go school." And stuck to it. She clamped her hands over her wheels and refused to move. I carried her to the bus, she screamed. The bus had no carseat; in the seconds it took me to fetch ours she went completely loopy and the driver refused to take her.

I drove her to school myself and left her in the classroom, her screams echoing through the corridors for a thirty second eternity until she found a friend and a toy and was fine.

I came home and argued with the wheelchair repairman who, despite admitting to having a 3 year old son, couldn't understand why my own 3 year old shouldn't make do with a buggy and might object to being pushed everywhere by someone else. Thankfully he was only in charge of repairs not supply.

I spent one hour on hold and then had to leave a message anyway. I spent another age waiting to speak to someone else who wasn't available. And two phonecalls bringing yet more problems.

I have been lied to by one person, misled by another and misunderstood by a third.

And my kettle has broken, I have trodden on Little Fish's glasses, and whilst typing this Mog has woken up into a seizure.

There's more but that's a flavour of the day.

edited today Tuesday because for some reason I wasn't able to get back into blogger to fix the mistakes last night. And because apparently I don't type so well when I'm cross!

Sunday, 11 January 2009

Day of rest?

My alarm woke me this morning which makes a nice change from child and cat combo. I say nice change; my mobile phone doubles as my alarm clock. New phone: new alarm. I set it last night, selected a tone for it and chose the "alarm" tone as didn't think I could face waking up to a Mariachi band or any of the other options available.

With hindsight, I should probably have tested this.

As it was, I was sleeping soundly when suddenly aWOOGA aWOOGa aWOOGa aWOOGa a nuclear submarine siren had me off the bed and practically out of the house with two girls in tow before I realised what it was. Not the gentlest way to wake up. Note to self: research gentle "pip pip" alarm tones before bed tonight.

Anyway, up, and awake - very awake - I leapt into action and started sorting the house ready for visitors. Our carer arrives to find me up to my elbows in vegetables and cheese sauce, with both girls awake and still somewhat shellshocked from our wake-up call. Two girls (and myself) dressed, hair and teeth brushed, joint in the oven and we head off to church.

Back from church to find our guests already home, and wonderfully, they have washed up and cleared a pathway through the clutter to all the chairs. It is good to have friends with similar lifestyles! The girls and Comeback were definitely pleased to see our friends:
I'm not sure what the girls were doing here, but they managed to snap out of it quickly enough!
Rosie wasn't quite so sure
But decided he might be just about ok
And actually reasonably interesting
Until he tried to climb further onto her leg; I missed the flying cat pic but it's probably for the best.

I'm reliably informed, by those most in a position to know, that Rosie likes pushing prams and buggies but never with dolls in them.
She does like to keep people guessing!

Meanwhile as this handsome young man relaxed in the sitting room
And these telly addicts chilled (quite literally; I forgot to switch the radiator on) in the playroom
This young man, without being asked, very kindly cleared up in the kitchen for me.And then relaxed with spot a music before, all too soon, it was time for the family to load up and leave us.
Thanks for coming, guys, we loved having you! Shame it's such a distance.

One slightly wobbly Little Fish after they had left, but quickly diverted with a reminder about our next activity. Into our own bus, pick up Grannie and Grandad and off to the pool for a special ROSY swim. Not many families taking it up this time, so we had the pool entirely to ourselves for an hour; lovely.

Back to Grannie and Grandad's house for a cup of tea then back home in time for a foody tea "Mumma I want meat tonight please. Not cold meat, hot meat, you microwave it please", showers and bed for small people.

And now bed for bigger people too I think.

Saturday, 10 January 2009

You might have a medically complex sibling if

You take the fabric seat off your doll's buggy and use it as a play hoist-sling.
You change your doll's nappy and give it a bottle and then give it suction too.
Your doll gets to play a bit and then do physio "big stretches".

You know the format for a proper medical handover and tell the doctors what is wrong before your parent gets a look-in.
You can count the different medicines and turn the feed pump on and off more easily than the babysitters.

You know when your sister needs help and when she's just teasing you.
You understand your sister can't move towards you and so you deliberately position yourself within reach so she can kick you - and then you come to Mumma telling tales!

You accept the fact that your sister needs a lot of help, and in fact you see your sister needing so much extra help that you refuse to accept that you might also have disabilities of your own which might limit you somewhat.

Friday, 9 January 2009

Just another day

A nice day, a lunch with friends day, a laugh yourself silly (and be thankful you are single and don't have to care for husbands incapacitated by bad backs) day, a coffee and cakes and carers' humour day. A blog post mentally written by friends at the time, but I'm afraid I got distracted with my shiny new iPhone which was waiting for me when I got home, so you've got these photos instead.

We all have responsibilities in this house. Little Fish believes she is responsible for everything (others disagree). Mog's biggest task right at the moment is to keep breathing and not fitting, but she's also responsible for kicking visitors, choosing our background music, ensuring I don't get any sleep oversleep, looking pretty, and generally keeping life interesting. I appear to be responsible for everything in this house not presently carried out by either girl.

That's the human part of the household. The fish are responsible for having babies, and are a useful bribe reward for visiting children - coats and shoes seem to find their way onto bodies and feet much more willingly when the fish need feeding before departure.

Which leaves the feline population. Goway may be seen here in his role as guard cat.
Seen here on patrol, it is his job to ensure that Mog's blanket does not get kicked off her feetAnd that her feet don't fall off the footplates. It is a job he takes very seriously.He also keeps a careful eye on any potential hazards, for example sweet wrappers, puzzle pieces, suction catheters and woodlice.

When not needed to guard Mog's feet, he moonlights as a supply clerk, doing his best to reduce wasteHere he may be seen rationing suction catheters, double checking feed supplies and insisting that the batteries are fully empty before releasing the charger and cable.

Meanwhile, elsewhere, Suction Cath is ready and waiting.


Thursday, 8 January 2009

Courtney, Courtney!

We had a visitor today.
I think it's safe to say both girls were pretty pleased to see their COURTNEY COURTNEY!In fact, I think everyone wanted to see herAnd talk to her, and do puzzles with her,
and show off our new skills with a paintbrushand get all beautifully excited about her, and be more animated and communicative than we've seen for weeks.

And then of course to get wildly overexcited when it's time to get ready for bed.And have to put your tights over your headbecause it is the funniest thing everuntil, suddenly,it is time for sleep.Goodnight, Little Fish! And bye bye Courtney, see you in the summer.


Wednesday, 7 January 2009

You might have a medically complex child if

You phone the doctor's surgery to order some repeat prescriptions, and the receptionist not only recognises your voice and pulls up your child's details on the computer before you even ask, she also reminds you about the drug you usually have to phone back for five minutes after you place the initial order.

The same receptionist decides to bypass the system and send your request to the doctor she knows will approve it rather than the duty one who will be confused and baffled by certain parts of it.

Yet again with one hospital outpatient appointment you can tick off several different specialists who catch you as you sit in the waiting room.

You come away from the appointment in the knowledge that your child has been referred to yet another specialist, in a whole new specialism. And you are reasonably pleased about it.

When you get home, you find messages on the phone from another two specialist nurses.

On phoning yet another specialist nurse, and discovering she is off sick, you realise you have the choice of tracking down a different nurse again, borrowing from another parent, or making do for a week. And decide you can work out how to reuse yet more of your disposable items.

You are able to hold a conversation about the consistency and odour of Bisacodyl induced poo as opposed to Movicol stimulated poo. Not only this, but you are for a few seconds deluded into believing this topic is as fascinating to the world at large as it is to your friends with similar life experiences.

You can give a child a drug, knowing that the drug will almost certainly cause significant problems which will land the child in hospital, and yet decide together with the relevant medical professionals that this is the correct course of action.

You can hook a child up to a pulse ox, and make an accurate prediction before the machine has taken a reading.

You can hear a silent seizure from the next room, even when asleep with a pillow over your head.

You can sit beside your child and readjust her head half an inch at a time until you find a position which looks ridiculously uncomfortable, but in which she is no longer obstructing with every breath. And then you can go to sleep hoping she doesn't move her head when yours is under the pillow.

Your bathroom windowsill has not only showergel, toothpaste, toothbrush and shampoo, but also alcohol gel, dressings, surgical tape, sterile saline and latex-free gloves.

Your drugs cupboard is bigger than your drinks cabinet, and the delivery driver from the chemist is so used to your house she now doesn't bother knocking and just walks right in to leave the bags on the hall table.

There are twelve boxes of disposable plastics in your garage, and all of them will be used this month.

You have at least three items of medical equipment plugged in and charging overnight, but you consistently forget to charge the telephone.

You can bribe your small child to do anything with the promise of a teaspoonful of lactulose.

You can fix a broken wheelchair or at least bodge it together until the repairmen come, fashion a joystick controller out of blue tac, parcel tape and a pen lid, keep a running total of various drug totals in your head to avoid overdosing a child in a 24 hour period, simulatenously operate a suction machine, make a phone call, turn off a feed pump and separate a small child from a pair of scissors, but discovering one odd sock which missed the wash can make you cry.

Got any more?

Tuesday, 6 January 2009


Shame is:

A beautifully peaceful morning. All children in school, albeit only for a couple of hours, all kinds of things which ought to have been done, but horizontal on the settee won. Very nice.

And then Little Fish came back from school, and pottered around for a few minutes before coming back to look at me very seriously. "Mummy, maybe you and me tidy the kitchen together. It is messy. You an me clean it together." My three year old child thinks that I need help in the cleaning department, and not only that, thinks things are bad enough that sorting them out should take priority over eating cheese or watching the Teletubbies.

I suppose it is just possible that she may have had a point...

So, we tidied. Well, I tidied, and washed up, and dried up, and put things away. Little Fish sat sipping tiny sips of juice from one of her doll's cups and passing comment "You hands dirty Mummy" "Those bubbles hot Mummy" "This one broken Mummy", and then started passing me items from various cupboards to wash, clearly thinking that the general washing up was not sufficient. And then she got cross that I refused to wash the trays up, and went off to sort things out in her own play kitchen.

I finished the washing up, abandoned the rest of the kitchen, made lunch for us both and came back to the sitting room. Now we had visitors last night, planned visitors, so the sitting room had been tidy. Apparently it's only mess in the kitchen Little Fish worries about though, as she was kind enough to pass this on to me to deal with.
I do wonder why I bother.

PS ADMIN: People have been having difficulty commenting; it should be easier now. If there are still problems please let me know.

Monday, 5 January 2009

My little helper.

Last day of the school holidays here today unless it snows again tonight, and it's not allowed to do that so I'm not even going to think about it . Our plan was to get out and do something fun and back to schooly, but for some reason we didn't quite make it out of the front door.

You know the house isn't in a great state when the cleaner swears when she opens the front door. So, stapling Little Fish to the floor distracting Little Fish with the lure of the Teletubbies, we had a house blitz.

Christmas decorations down, tree in the garden, pine needles clogging the hoover. Two loads of washing processed. Bathroom polished, kitchen tidied, previously undiscovered work surfaces now finally visible.

And then the cleaner went home, and I released Little Fish from her temporary prison cell turned the television off.

And then the doorbell rang, and the man from Abbott Hospital to Home turned up with what was supposed to be a month's worth of feed supplies. For some reason our usual order - four boxes - had multiplied; instead of adding one small fifth box to accommodate the new design of feed bag we now had twelve. Great. I stacked them in the garage, Mog listened to her music, and Little Fish decided the cats were hungry.I found the dustpan and brush, the box for the feed, fresh water, more wet food, and Little Fish decided her baby was hungry and thirsty. So she fed him some cheese and lactulose.And then decided she was hungry herself, and would quite like some bread and milk. So I made her her lunch, and she then decided it needed to be cooked properly.And you thought I was joking about the need to staple her to the floor.

Abandoning all hopes of allowing her out of my sight doing anything productive, I decided we'd do some baking. We made a nice batch of chocolate brownies, and I gave Little Fish the bowl to scrape out.
I thinkshe mighthave enjoyedherself!
And after that a nice long soak in a bath meant that she was finally safely contained in one space for a while, ready for a nice early night, and clean enough to pass muster at school tomorrow.

It's school tomorrow. I can't wait!


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