Friday, 26 December 2008

Holidays are here again

We are off on our holidays for a week from tomorrow. Eight cottages, eight families (we hope, one child in hospital so one family may have to join us a couple of days late), seven days of retreating from the real world and living in our own little enclave with neighbours who understand what it's like to have a child with a disability.

I'm not sure what internet access, if any, I'll have while I'm away. I thought I'd seen a WiFi sign on one of the things I'd read about the cottages, but there's definitely nothing there now. My dongle has gone for a wander, and my phone is ancient and unhip. So I probably shan't be around until the New Year - I hope those of you who are out celebrating have a good time, and those of you who are staying in have a peacefully uneventful night.

See you in 2009,
Tia

Thursday, 25 December 2008

A blogger's Christmas

Mog had a beautifully peaceful night last night - too peaceful; I have gotten used to hearing every breath she takes and so had to keep checking she was actually still breathing. Happily I had plenty of opportunity to do so, since Little Fish was not a happy person much of the night. Hot and "I not comfy Mummy" and a pyjama sleeve which did not want to behave itself and kept somehow freeing itself from her arm and wrapping itself around her neck or Nippy hosing instead.

So a respectable morning start at 7, medicate Mog and find her some Christmassy clothing, then watch her fall asleep as I drink the first coffee of the day. Radio on, clothes on, more coffee surrounded by the silence of sleeping children. It's nice not to be woken at silly o'clock by children too excited to sleep, but after nearly ten years of being a parent, it would be nice one day to have a child even vaguely excited about the prospect of Christmas.

Grannie arrived to help out, then left to ready the church. Little Fish declared herself full after 6 spoons of porridge, got excited at the party dress then very sad at the idea of tights. Her reflux is playing up at the moment so I now temporarily have two children on feeding pumps, fun times. The pumps we get (and no, we don't have any choice about which make of pump or even which model) come with a rucksack which is larger than Little Fish's back; she wears it sitting in her Minny chair and it comes up over her head and rests on the floor all at once. Mog my big girl has hers running at 90mls an hour and we just about manage to get 1.2Litres into her over the course of a day. Little Fish my toddler now has hers running at 300mls an hour and gets the same volume in 4 separate hour long feeds. And doesn't fidget, I don't get my hair pulled and my face slapped for fiddling with her sore tummy, and she doesn't puke. Just a minor tantrum as we turn it on. And then major potential for mayhem as she dances around Mog weaving an intricate web of tubes and giving sets. Good times.

To church, and to a sentence I never thought I'd say "Jesus is the only true WYSIWYG" ("What you see is what you get" for the non bloggers amongst you). We had a biscuit tin filled with rubbish (what fun), a lemonade bottle full of water (oh the joy), and earmuffs instead of headphones for the drummer (I reckon the drummer's family and neighbours might appreciate the headphones more than the drummer anyway, but what do I know?). Wildly excited children, some of whom claimed to have been up before 4, a church packed full again, jubilation and celebration and glee. And Mog slept through it. And Little Fish sat on my lap kissing my nose whispering "I like you Mummy". It could have been a lot worse.

A quick church tidy up (what do you do with 80 leftover Christingled oranges?) and back to my parents' for some cooking. Mog slumbered on, Little Fish slowly and deliberately transferred cheese biscuits one at a time onto a plate, then repeated the process for chocolate truffles, mince pies, and finally unwrapped the butter and put it in a dish - a process so exciting she had to take a trip into the sitting room to show Grandad.

Into the dining room, a table, assorted chairs, a Christmas tree and presents presents presents underneath. And Little Fish more excited by her highchair than by thoughts of any gifts.

Lunch (goose). Mog woke up, had a lick of Christmas Pudding, choked and opted out of other foods.

Finally coffee and time to open some presents. Mog opened her eyes. The girls started with their gifts from Helen House, and Mog's doll turned out to be her favourite.
She held it in her arms for the rest of the afternoon, not knocking it off or kicking it down once just clinging on firmly and dribbling gently down its back. We could have stopped there, and both girls would have been happy.

But we didn't stop, and now both girls have books and scarves and snuggly blankets, Mog has a coat and a shiny silver hat, lots of music and assorted new tops. Little Fish has an entire range of In The Night Garden stuff - amazingly no duplicates and each new piece greeted with further glee. An Upsy Daisy in bed, a Makka Pakka, a Ninky Nonk (I want a Ninky Nonk, would make a great rollercoaster - Alton Towers or similar please take note), stickers, books..it's safe to say she's a very happy girl. And she has her own little cooker now (not a working one, although it does have a rather annoying noisy little button on one ring which when depressed suggests adding salt and pepper or cooking soup. Inspired idea; she spent a good hour cooking cabbage and car soup to feed to her new baby, as Mog clutched her doll and looked on, grinning quietly when she thought no one was watching.

Dr Who ("what's that Mummy who's that what's that why they do that oh NO what's that what's that?"). And then walk home, and utter meltdown for Little Fish (and grins from Mog; she does find it funny when LF gets into a state), and then bed. Two cats queuing in the hallway pretending to be starved. And Mog, still not able to sleep in her bed, but cuddled to sleep in my arms and then gently placed hefted into her armchair for hopefully another peaceful night.

A good day. Family times, phone tag with relatives (both mine and Mog's), good food, a cosy sort of a day.

And now sitting here in peace, Mog's music playing softly and the hiss and whine of Little Fish's Nippy hinting that she may finally have settled. One cat on the kitchen table watching the fish, the other on a comfy chair watching me and trying to persuade me to go to bed. He could well be right.

Night all.
Tia

Wednesday, 24 December 2008

Christingle merrily on high.

The Christingle.
It's a beautiful service, the Christingle, very symbolic. An orange to represent the world, sweets to remind us of God's gifts and the four seasons, a red ribbon for the blood of Christ and a candle for the Light of the World.

Lovely. We have our Christingle on Christmas Eve - two of them now so more people can come. And even then the church is packed to the rafters, children sitting on carpets and knees and shoulders and running up and down the aisle, parents and grandparents trying to contain the excitement and catch a few words of the service.

A short pause to fix our eyes on Jesus before bedtime and stockings and Father Christmas and reindeer and mysteriously closed doors with intriguing sellotaping noises seeping through the house.

Alternatively, 200 people, over half of them children under ten, each child armed with a lit candle in a building made largely of wood, many of them totally unfamiliar with the layout of the church. Mayhem potential: high.

I quote the curate: "Parents, er, perhaps it would be a good idea if you could hold onto your children firmly now. When lighting the Christingle, please hold the unlit candle sideways and the lit candle upright to avoid spilling hot wax. Please sit still. Emergency exits are situated to the back and side of the church and in the event of an emergency ocean landing, the chutes will turn into lifeboats. Due to the highly flammable nature of the candles, oxygen masks will not be descending from the cupboard above your heards. Children, please stay with your parents."

Eventually the only light in the church is a slightly wobbly, breath-holdingly excited bobbling of white candles, as we sing "Oh Little Town of Bethlehem".

O little town of Bethlehem,
How still we see thee lie;
Above thy deep and dreamless sleep
The silent stars go by;
Yet in thy dark streets shineth
The everlasting light.
The hopes and fears of all the years
Are met in thee tonight.

For Christ is born of Mary,
And gathered all above,
While mortals sleep the angels keep
Their watch of wondering love.
O morning stars, together
Proclaim the holy birth !
And praises sing to God the King,
And peace to men on earth !

How silently, how silently
The wondrous gift is given !
So God imparts to human hearts
The blessings of His heaven.
No ear may hear His coming;
But in this world of sin,
Where meek souls will receive Him still,
The dear Christ enters in.

O holy Child of Bethlehem,
Descend to us, we pray;
Cast out our sin and enter in,
Be born in us today.
We hear the Christmas angels
The great glad tidings tell,
O come to us, abide with us,
Out Lord Emmanuel !

Silence then, or what passes for silence in a barn full of overexcited children waving flames, and as we pray I notice two enterprising children toasting the mini marshmallows from their Christingle over the candle flames.

Candles out, a collective sigh of relief from Curacy and Sidesmen all.

And then into the foyer and many Christmas greetings, from regular parishioners and from visitors. And then home, and time for this
before a bath and bed. We don't do stockings here, Little Fish is scared of Father Christmas and Mog is far too wise for her years. So the big treat tomorrow morning will be Grannie coming to help me get the girls dressed, and then we will be off to church and then to their house for food and presents and general family fun.

And now Mog is asleep, and Little Fish has finished coughing, the cats are fed and the house is settling down for the night.

I hope you all have a peaceful night and a beautiful day tomorrow.
Happy Christmas,
Tia and the girls.

Tuesday, 23 December 2008

Yesterday

Yesterday
All our lurgies seemed so far away
Now it looks as though they're here to stay
Oh let's go back to yesterday.

Suddenly,
Little Fish has a fever of 39 degrees
And has puked a puddle on my knee
Her lurgy might be killing me.

Why it wouldn't go,
I don't know, no one will say
I just want to know
If they'll be ill on Christmas Day, hey, hey, hey

Yesterday
Mog was wide awake, hip hip, hurray
Today she slept the day away
It's bedtime now and she wants to play

What this germ might be
I don't know, no one will say
I just want to see
Them both well for Christmas Day, hey hey hey



All I want for Christmas is a week of sleep
A week of sleep
A week of sleep.
All I want for Christmas is a week of sleep.
A week
Of
Sleep.


I think blogging abilities and general all over brain functioning would be improved no end.

I am off. To dream, perchance to sleep.
Tia

Monday, 22 December 2008

Look Who's Back!

I think she mightbe feeling
better!


After lots of petty ridiculousness we finally managed to come up with a plan of action. Her neurologist felt that all Mog's recent symptoms could be explained as side effects from her newest anti-epileptic drug. So, on Friday, we halved it and added in one of her older drugs - Vigabatrin.

On Saturday morning Mog slept for 3 hours. A calm, peaceful sleep, no harsh breathing, no spasms or seizures and not as a result of painkillers or sedatives. And in the afternoon, she opened her eyes. And in the evening and overnight she screamed mightily and refused to settle and was generally all round horrible, but perhaps we won't focus on that bit.

On Sunday morning Mog slept again. And woke up, and spent the afternoon quietly grinning. And the evening and overnight being way beyond awful, and was banished to the playroom with Alice in Wonderland playing on a loop in the wee small hours, but perhaps we won't talk about that much either.

And this morning Mog slept for an hour. And then she woke up enough to stick her feet out as I pushed her round the corner, and then to kick her blanket off when we went into town.

And this afternoon she has decided to start taking an interest in life again. Eyes wide open, gentle shouts, and real communication once more - big tongue out yes when we ask if she's feeling better, big scowl when I explain what we think was happening.

Things aren't perfect, she's still needing a fair bit of suction, she's shooting dribble despite her anti-dribble drugs, her breathing when awake is still quite harsh. But she's back, she's here, she's aware of her surroundings again. The rest may come back when we discontinue the new med altogether. But whether it does or not, right now, I don't mind. She's back, and this makes me very happy.

Tia

Sunday, 21 December 2008

Little Fish and Ella Bella

Little Fish has a new interest. Meet her "Ella Bella". It took me a while to work out what she meant, so she dug through the cupboard until she found one.
And now it travels everywhere with her. "Bit cold Mummy, take Ella Bella on a walk".

Little Fish has taken to whizzing up to me and saying "I not liking you Mummy" and then going away again. This is surprisingly upsetting. She has now amended this. After several "I not like you Mummy"s, she now comes back with her head tilted to one side and says "I don't like you Mummy...I LOVE you!" Rather sweetly, she has now taken to watching me doing the washing up and then saying "Thank you Mummy, you tidy up for me."

I do tidy up for her. A lot. Too much. This morning, we made chocolate truffles. Then we cooked lunch. And then I started looking for my Christmas Tablecloth. It was inevitably invisible, as were all my other tablecloths. I don't know whether to be annoyed with myself for losing them yet again, or pleased with myself for managing to run this oneup in a matter of minutes before our lunch guests turned up. It is a remnant which was going to make Christmas Aprons; perhaps next year if it doesn't end up in that mysterious seasonal items black hole.

A nice lunch (leg of lamb for anyone interested), a lazy afternoon, and then time to tidy up. So as I began to tackle the washing up mountain (really must get that dishwasher replaced), Little Fish decided to tidy up the remains of the chocolate sauce. Perhaps not the most balanced meal, but for Sunday tea after an enormous lunch, probably not dreadful either.

Special treat, she took it into the playroom to eat whilst watching the Teletubbies. The Teletubbies were making messes and muddles and spilling their Tubby Custard. This is possibly not the best programme for Little Fish to be watching. I heard her chattering away but stupidly tuned her out.

And then walked in to find that she had been doing some cooking of her own. Take one big bowl of chocolate pudding, and one small plate to eat it from. When your mother isn't looking, smuggle one of the other leftovers from lunch onto the piano stool.

Stir. Pea Pudding anyone?

I looked at her, she looked at me. I sighed and went to fetch a cloth, she wiped her fingers and then said "I bit tired now. Bit manky, you bath me I go to bed". Who was I to argue with that? At least Ella Bella had the sense to stay out of it.

Tia

Saturday, 20 December 2008

20 20

Hindsight is perfect.

If things had been done differently, if decisions had been reversed, if steps had or had not been taken, if things had or had not happened, if life were different, then this would have been my Goldie's 20th birthday.But our present sight isn't perfect, and mistakes were made, by a number of people, and she died.

Having sat through her inquest it seems pretty clear that although we know what mistakes were made, we're not going to know who made them. I'm ok with that - blame doesn't bring her back, and hopefully shame prevents it happening again. I am confident that none of the mistakes were made maliciously and that everyone working with Goldie genuinely believed themselves to be doing the right thing by her.

But for all that, the fact remains that she isn't here to eat the pizza, crumble the cake and screech at the singing. She isn't here to be totally underwhelmed by whatever ideas we had to celebrate her birthday, she isn't here to accept all the Christmas celebrations as one big extended birthday party, and she isn't here to spurn anything new in favour of her old favourites.

She didn't make her 20 20. Or perhaps she did, and perhaps she's having the most marvellous party of all, together with all her little friends who have joined her this year. Selfishly though, I would prefer it if she were here for me to get frustrated with her for taking so little interest in the procedings and for attempting to eat the (lit) candle.


"We don't yet see things clearly. We're squinting in a fog, peering through a mist. But it won't be long before the weather clears and the sun shines bright. We'll see it all then, see it all as clearly as God sees us, knowing him directly just as he knows us. " Corinthians 13.12.

Bring it on.

Tia

Friday, 19 December 2008

All the world's a (radio) stage.

And all the men and women merely players.

And tonight I had the somewhat surreal opportunity to listen to someone else playing me. Or rather, playing someone else's interpretation of me. It was an odd experience, hearing echoes of things I have said, seeing memories from someone else's point of view. And then having them all played by someone who only knows me from the lines written on the script in front of them.

As I listened memories washed over me. Memories of that little girl lost, the reality of events as they unfolded (the play being fictionalised), working out what I remembered, and what had been created, abridged, altered to fit.

And I remember holding that precious bundle and walking away from hospital with her, breathless with the trust placed in me, with the responsibility of this little tiny baby. And I remember that first night, with her lying in the carry cot beside me (our Moses basket being in serious need of a clean), listening once she had finally fallen asleep, just listening to the softness of her breath.

I remember waving her off on her contact visits and listening to the peace in the house, no longer echoing to her cries. And I remember watching the clock when the time came for her to return, wondering if this visit would be the one where her parents realised how wonderful she was and chose to take her home.

And as I listened, that larger girl less lost now woke up and started crying again, and I held her and I rocked her, a big long stiff pretzel of a child rather than that raging ball of fury. And I realised how far we've come, and also how little progress we have made. True, she doesn't cry all the time any more, I don't have to carry her around all the time any more, she knows how to smile, and she can make choices. But for the last few weeks, we seem to have lost that. Her personality has disappeared, retreated into herself, and we are left with a larger version of that little baby. She is stiff, sore, spasmy, crying, screaming, sobbing, raging, struggling for breath. She doesn't vomit any more - she can't, thanks to the world's tightest fundoplication - but we've swapped that for suction and an inability to swallow. When she is like this I wonder at her predicted life expectancy, and hold her even closer - every snort and gasp she makes in her sleep I wait for the next intake of breath, and as it did when she was a baby, it sometimes takes too long.

But as I listened, so did she. And she heard the music playing. Angry voices make her upset, but the music had her calming down. Soft chords on the piano, a repeated nursery rhyme, children's voices singing - and she was cooing too. And I realised she's still in there. It's buried deep; she's concentrating on overcoming whatever it is which has wiped her out so much. But she's still there, and I hope she'll be back with us properly soon.

After a long and frustrating day chasing different medical people and getting nowhere fast, we do finally have a treatment plan. We are working on the theory that her newest anticonvulsant is causing her current problems. And so, fitting in neatly with the circularity of comparing her now and then, we are going to go back to her very first anticonvulsant, and hope that it works for her now as it did then.

I hope so. I miss my happy kicker, my laughing at every cough-er, my stick my arms out as we go through the door just to collect bruises and be awkward child, I miss her laugh, and her song. And I miss my sleep.

So if the great Script Writer and Author of my life could just tweak the next chapter in our favour, I would be very grateful.
Amen.

From this

to this
again please.
Tia

ps- I mentioned it a few days ago, but if you'd like to hear the play you will find it here for one week.

Thursday, 18 December 2008

Healthcare Bingo

Bored of the postcode lottery? I offer you an alternative, which may be played whatever your address and from the comfort of your own home. This is I suppose the armchair version of the Special Parent Olympics.

You will need at least one child with complex medical needs, score bonus points for having more than one. You will need to have at least theoretical access to a variety of different healthcare professionals, with ideally a range of specialities, and a number of different categories of professional.

All set? Good.

There are two ways of playing this. The first requires planning, forethought, and a "week to view" diary. The challenge? To arrange sufficient appointments to see each and every one of those professionals within a standard Monday to Friday week (outpatient appointments only; being admitted is cheating*).

The second is in theory a faster game. For this version, you need only your telephone and infinite patience with receptionists. Take your telephone, and attempt to make contact with at least one healthcare professional in each speciality. There is a time limit on this, and that is the time available to you whilst your youngest child watches a feature length episode of the Teletubbies.

Bonus points are available should you manage to make direct contact with a doctor. Medium prizes available should any doctors spontaneously call you during this time frame. And to win the jackpot, you need to be phoned by the consultant from a different speciality, before you have managed to leave any messages for him.

A small extra prize is available (or if it isn't, it jolly well should be), for managing to juggle these phonecalls with an in-house appointment with a bed rep. If you manage to contact the OT and let her know said rep has turned up 30 minutes early, you may be rewarded with the gift of her presence. Suctioning a small child whilst continuing to receive the qualifying phonecalls will give you a larger gift; the OT will decide you definitely need the more expensive superwhizzy expensive bed with the fancy bedsides and decent profiling mattress.

Listening to the bed rep discuss dimensions of the bed with the OT and requesting that the OT measures the available space in the bedroom will win you an additional prize - a Disabled Facilities Grant assessment (with added extra of larger drive to accommodate larger more accessible and more able to convey larger amounts of equipment van).

This will, in a few month's time, win the biggest prize of all - more builders. Marvellous.
Tia



*Being admitted with an unidentified illness requiring the immediate attention of at least one professional from each speciality entitles you to play hospital bingo instead; House may be called only if you manage to see all those professionals within the initial 4 hours in A&E. An extra prize available if by the end of the admission you have gained access to a new set of specialist in a hitherto unvisited area of medicine.

Wednesday, 17 December 2008

A Woeful Wednesday

A definitely woeful night. An early night for once, in bed and asleep before ten, and then woken at 11 by Mog's feed pump which I'd forgotten to turn off, oops. Mog definitely woeful but settled with the aid of the sedative I'd been congratulating myself for not needing earlier in the evening.

Midnight and Comeback start howling at the moon, waking Mog again.

At 1 Little Fish had nightmares.

At 2 Comeback decided an encore was in order; I decided a night in the kitchen was definitely what he needed.

4.30 and Mog awake again and needing pain relief.

5.30 and time to turn Little Fish.

6.30 and Mog awake and needing her dribble drugs. And then it was time to start the day.

A new carer running late for the third visit in a row - it doesn't bode well for that point in time when her checks finally come through and she starts working rather than shadowing. And a woeful Mog unimpressed at getting dressed.

A woeful Tia with the discovery that the "service me now" spanner icon on Little Fish's Nippy was flashing merrily this morning - one trip to the hospital to get it fixed.

And one very woeful Little Fish theoretically playing the part of the "Inn-Keeper's wife" at her preschool Nativity. Much woe at the thought of sitting on the stage with the other children, much woe at the thought of spending time with the preschool staff, much woe at anything other than sitting on my lap trying to eat my jumper. It is at times like this when I question the wisdom of trying to get her integrated into mainstream life; last year for the special school Nativity she was a bouncingly cheerful Angel happy to play her part and get on with things.

More woe with the realisation that the knob from Little Fish's powerchair controls has jumped off and run away again. We retraced our steps and couldn't find it; I will have to create something (again) with pen lid and blutac.


Woeful news from the doctor's surgery - no blood test results back yet, and the sample was probably too small to test. We will know tomorrow afternoon. Which means no point in booking an appointment for tomorrow morning as any doctor we see will simply tell us to wait for the results. It's getting very close to Christmas to be thinking about making major changes, but if things stay as they are I don't see how we will be able to make the long drive to our holiday cottage on the 27th.

Side note: Becca, I like the idea of perching her precariously over a bed pan; and if she had her humour back she'd find the whole idea very very funny. And would perfect the art of kicking the filled item off the bed and up the walls. You mentioned staying in - does that mean you're out of the nursing home now? Excellent news if so! If not then do we need to be mounting a raiding party somehow to spring you? Mog has a good splattery cough she could threaten folks with if necessary.

Some cheerful news from the hospital, there's a spare ventilator and all we have to do is swing by and pick it up. We do so, bumping into a net-friend whose son has just had a minor op and is doing well. We panic a more local friend who knows Mog is ill and sees our van parked outside the hospital - and we have time to chat for a bit before her son's minor op and our drive to our next destination. I wonder what it says about us, that a quick trip to hospital becomes a social occasion?

We'd planned to skip our next activity, but since I'd forgotten to cancel it and we were driving past anyway, we called in at the hospice for a Christmas music making celebration party thing. Neither girl was overjoyed with the music - which says a fair bit about Mog's present state; normally she'd have been fascinated by the combination of violin, 'cello, and enthusiastic but amateur bells. Instead she decided to demonstrate to assorted staff and families just how well she can do being ill.

Friend and I decide to stay on after the party for a while to let the traffic die down before driving home. This proves to be a bad move. Mog's glycopyrrulate has very definitely worn off, and the journey home is interspersed with short dashes from driver's seat round the bus to passenger side sliding door to empty Mog's mouth for her, with Little Fish shouting encouragement all the while. It's tempting, but I think I am right in believing a three year old with learning disabilities should probably not be trained in suctioning her bigger sister? I know I tell people it's easy but I suspect that might be pushing it slightly?

We do however make it home eventually, where the woes begin again. The cats are deeply woeful; Little Fish has emptied a bowl of Christmas sequins and glitter over their food. It's festively sparkly but they are unappreciative.

Mog's evening woes begin in earnest and she cries the cry of the very tired, very cross, hot poorly person. And keeps it up until her medicines switch her off, several hours later.

Little Fish's woes are delayed somewhat - a minor wibble rather than a woe at the prospect of actually eating the pureed broccolli rather than using it to fingerpaint her tray - and then a major wobble at the idea of having a tube feed. And then big big woes; the new ventilator has all the same settings as the old one, it has her mask and her elephant tubing, and is on the same shelf in her room and plugged into the same socket. But it sounds and feels different to her old one. Gentler somehow; comforting to me. But deeply distressing to her, used as she is to the whoosh and rattle of the one she loves.

But eventually both girls are settled and their woes are set aside for the night. Leaving space for a small mini woe (a wee?) of my own; the takeaway shop was out of chicken dumplings. Shocking!

So now it is past ten, both girls are still asleep, one tucked up in her bed with a soggy sleeve to suck, the other slumped in an armchair with a gentle rattle at the back of her throat. And it is time for me to be horizontal somewhere without a computer.

Goodnight
Tia

Tuesday, 16 December 2008

A bitty post

Today I heard that Trevor died yesterday. Due to the severity of his disabilities, it was felt that life on a vent was not a long term option. So he and Barb went to their local children's hospice, where he was extubated and then allowed to fall asleep in his mother's arms. A peaceful death, after a Christmas Party on Sunday in ICU with all his friends around him. But a sudden death; even two weeks ago he was making surprising cognitive leaps and startling those around him. Pray for Barb now as she goes home to an empty house.

And yesterday I heard that one of our ROSY babies died over the weekend after a short illness.

That makes five children in the past two months. And it isn't deepest winter yet. Rest in peace - or dance with Goldie, whatever makes you happy.


Mog is poorly. I took her to the GP to get her blood test this morning. Many thanks to Little Fish's nursery teacher for looking after her over lunch. The nurses were only able to get 0.5mls of blood out of Mog and apparently are not allowed to use the veins in her wrists (which are her best bleeders), nor are they allowed to try more than twice. So they will send 0.5mls of blood off to the lab and hope they can do a proper test with it. If not then we have to try to arrange an appointment up at the hospital with a paediatric phlebotomist.

Mutterings have been made about testing her urine. But no one wants to use a sample from her pads, she can't sit on a toilet, and no one wants to cath her. So we're just not testing it. Mutterings have been made about testing her sputum. But although I'm getting good at catching it, no one seems to want to do anything with it.

Meanwhile we have a hot child who is too floppy to kick her legs to show off her boots. A child who is too lethargic to swallow properly. A child who is quiet and tired during the day, and miserable and apparently in agony during the evenings. Oh, and as of today we can add in diarrhea and a certain amount of retching too.

There's a possibility that this is the new Mog. There's a possibility that this is all drugs related. And there's a possibility that she's ill with something we haven't picked up yet. I just wish that someone could swoop in and tell us what's wrong, and what we need to do to fix it.


We decorated for Christmas this afternoon. Lights and balls and bells and tinsel on the tree, and the ornament Goldie helped to make one Christmas at the hospice. Each year I hang it on the tree trying to find somewhere where I can see it but where small fingers can't smash and grab it. This year I've skipped the chocolate decorations and have gone for candy canes instead. I don't like candy canes, so hopefully they'll stick around for a few days.

Tinsel hanging over our photo frames, and what looks like star-studded barbed wire around the hall. Our Nativity carefully arranged where questing fingers cannot find it. I realised as I put decorations out that certain cards and decorations have been out all year; there's a Christmas card sitting on the bookcase which has been there since last December and a sprig of holly which has somehow survived the past twelve months too.

Little Fish helped by trying to run off with the spare bulbs for the tree lights, trying to water the trunk with her multivitamins, and pulling the balls off the tree to post them into narrow cracks elsewhere in the room. Mog helped by refraining from needing suctioning until I was poised mid-air sellotaping the barbed wire stuff to her door frame. The cats helped by carefully lifting random blobs of food out of their bowls and spreading them festively across the floor. And yet somehow we managed it.


And we managed it in time to be smilingly ready for the photographer and for Mog's other family; another photo shoot and another story told from a different angle in a different magazine. I hope that telling Mog's story, and especially telling Mog's mother's story, helps others who may find themselves in the same situation.

On which note, anyone interested might like to tune into BBC Radio 4 on Friday evening; this week's play is a dramatised version of When the Bough Breaks . It will be available on the Listen Again thingy until Boxing Day.


And now it's getting late, and Mog is miserable again. Not coughing any more but writhing in pain and I don't know which bit of her is sore. I'm thinking stomach; it seems to be coming from somewhere fairly central, but how to know for sure?

I'd really appreciate some answers tomorrow; I just hope that little drop of blood somehow stretches to be sufficient to run the tests.

Tia

Monday, 15 December 2008

Lurgy

So after a rotten night, I took Mog to see the GP this morning. Our own GP is on longterm leave at the moment, which means we get to see whoever is on duty or has a spare slot when we ring up. Not ideal, but fine for emergencies. However this means that adding the two on-call doctors we've seen that's four different doctors for one bit of illness, hard to find the continuity in that.

Today's doctor was thorough. A good chest listen and stomach squidge, temperature (high), sats, ears and throat, urine discussed and discounted, medications checked, and child observed closely. And the doctor said "hmmm" lots and "yes I can see what you see" several times and "no she's definitely not right is she" a few times and then "come back on Thursday" once. She isn't ill enough to be in hospital (I agree), she isn't right at all but she doesn't have any obvious signs of infection in the usual places, so antibiotics probably not going to be particularly helpful. So we plug on with the antipyreticals and extra water, keep her comfortable and will probably see him again on Thursday. At which point I do hope he'll actually do something - although I'm not sure what? Swabs, bloods, something? There must be some way of identifying what has knocked her for six in this way. She's exhausted.

One strange thing - usually her seizures are quite jerky twitchy things. She's so floppy with this that even her seizures have slowed down, less starfish more jellyfish, less coat hanger, more scarf waving in the breeze.

And so for Mog the school term has finished early - Happy Christmas?

Edit: The doctor we saw has just phoned and would like us to arrange a blood test for Mog to make sure it isn't her new anticonvulsants causing this. Naturally the only time the nurses can do a test is tomorrow morning right at the time when Little Fish is due back from school, so now I guess she's finishing her school term early too. 'Tis the season to be Jolly ill

Tia

Sunday, 14 December 2008

A Day in my Life

It's the 14th again. Thanks once again to Little Jenny Wren for hosting a day in my life.

My day started much too early, when Mog decided she couldn't sleep any more at 2AM. We were staying with friends, so I spent the next five hours trying to keep her reasonably quiet. Oh, and breathing, since she was having difficulties there. I like to think I would probably have chosen noisy breathing possibly waking our hosts over no breathing at all being nicely quiet; thankfully we didn't get to put that one to the test though.

Eventually I gave her her morning meds and, thinking that she'd settled a little, slipped into the bathroom to sling some clothes on. I heard her fussing so slunk back into the bedroom again, to be greeted by the sight of Mog sitting on L's lap, and a steaming cup of coffee for me. Lovely.
No photos from the morning miseries so here's the late night laments instead. She was not a happy bunny. Placating the small children with an overdose of Cbeebies we adults sat for a bit attempting to wake up and work out where we were going later.

Our goal, Disability Challengers in Farnham, for the Special Kids in the UK Christmas Party.
Little Fish was rather excited, especially by the idea of visiting Father Christmas. Sadly the idea was more exciting than the reality, and "I not want a man, Mummy, I not want his present, I not want a photo I not want a cuddle I am not liking you Mummy". So much for that then! She did quite fancy the present once it was opened though,and safely barricaded in by Mog, had a good look at her new Upsy Daisy book.

Mog opted out of the party, and whilst her body may have been in attendance her mind was somewhere else entirely. I hope it was in a nice place, because her body was having a rough time of it. Large green chunks of solid gunk resting at the back of her throat needing lots of suctioning, to the dismay of all our friends who saw her in the summer when she was enjoying life a lot more. I'll spare you the graphic photos.

A nice lunch but we left early; Mog was not fit for socialising and I was a little worried about how we'd get home - I may be versatile but driving a large van and simultaneously suctioning a child sitting in the back of the van not really feasable. We need a new van. One with an automatic remote controlled snot hoover. In the meantime we had a Little Fish who could be counted on shouting "Mog needing you Mummy" just as we hit the busy roundabouts. Great.

A slow trip home then, since I decided to avoid motorways and go for the roads we could pull in on if necessary. Home at 4 and mayhem.Starving cats. Brutally abandoned for 24 hours, now mewing at the door demanding food. One dodgy fish tank with 1.5 dead fish in. I'll spare you the picture of that too. And of the search for the other half a platy. Much screeching and squawking from Mog and Little Fish, several filthy nappies (aren't you glad I edit the photos?), and a fairly grotty evening.

Our carer came, Mog was hysterical on my lap so the carer managed to persuade Little Fish into a bath instead. One clean Little Fish realised that Mog was still sobbing on my lap and decided she needed my lap too. One carer trying to dry a Little Fish who is trying to push Mog off my lap. It got loud.

And then it got quiet. And I posted Little Fish into bed where she switched herself off within seconds of me switching the light off. Mog struggled on, objecting to life and the world and everything, until her evening medicines kicked in. She is now sitting opposite me, fast asleep, fitting, and breathing too fast.

I don't think she'll stay asleep very long. I do think we'll be heading to the doctor again in the morning. And I suspect I'll be up quite a lot tonight too. So for now this is me saying goodnight; I'm going to grab what sleep I can get.

Hopefully next month we'll be having some happier times - Mog has had a rotten run of things lately.

Sleep well,
Tia

Friday, 12 December 2008

Fretful Friday

Following on from yesterday...

Mog kept me up til silly o'clock at night, then woke again at stupid o'clock in the morning. And again at totally insane o'clock, and finally at child-you-are-risking-your-life-can-you-really-not-cope-without-music-for-twenty-minutes o'clock. After which I gave sleep as a bad job; there are times when it just isn't going to happen.

So, child awake, dressed, hair tamed, school bags assembled, bus arrived and Mog safely shipped to school for the day. Coffee poured, washing up finished, washing in machine, and the phone rings. It's school. I have forgotten to send in Mog's sling, without which she can't be changed or moved from her wheelchair. I promise to drop it in as soon as Little Fish wakes.

And then, because the other phone somehow got left in Little Fish's bedroom last night, she is awake. And feeling much better than yesterday, although apparently not well enough to get dressed. Upsy Daisy pyjamas for the day it is then.

I strap her into her carseat and throw a blanket over her, we head off to school with a sling. I leave her in the car and throw the sling out at a somewhat startled LSA. And then since we are in the car anyway, we head over to Kidlington to collect a parcel. Again Little Fish stays in the nicely warm van as I shudder my way to the counter, pay the charge and collect my enormous roll of Zorb. Little Fish gets the giggles as I post it over the top of the driver's seat and onto her head.

We are about to drive home but I am distracted by signposts promising "Fresh local Christmas Trees". We investigate. And are directed through country roads and round corners until suddenly we find the world's smallest Christmas Tree shop. Not unnaturally, Little Fish declines to stay in the warm at this point, so I wrap her in Mog's poncho, hoping to disguise the pyjamas and bedsocks somewhat, and perch her on one hip as we make our choice. I then have the pleasure of hauling one 3foot Christmas Tree to the wrapping machine with one hand, balancing Little Fish with the other, as four members of staff stand watching me and sipping hot chocolate. We get to within 2 feet of the cash desk when one man finally sips the last of his hot chocolate and offers help. I pay, grumpily, and the tree is loaded into our van.

Home, and no bicycle outside so we are hopeful that our cleaner has been and gone. I have nothing whatsoever against our cleaner, however she much prefers it if she can have the house to herself, and does a far better job if we go away and leave her to it. Even if she does insist on throwing out my takeaway menus and putting the steak knives in Little Fish's cutlery drawer. But as we open the door, the unmistakable Fox FM jingle runs through the house; lights on, hoover on, our cleaner is here. Has she caught the bus? No, she has cycled, and has chosen to park her bike in Little Fish's bedroom as she thought we were out. Is it just me, or is that an odd thing to do?

Anyway, she cleans, we camp out on the settee doing the Charlie and Lola puzzles for the umpteenth time, she leaves, and Little Fish goes into action restoring the house to its former lack of glory.

And then this. "Mummy, you love me?"
Yes, I love you.
"You love me always?"
I love you always and forever and from before we ever met.
"You love me really really?"
Yes, I love you.
"My bottom singing. La la la parp prump parp pop pop".
Thanks, kid.
And now it is evening again. Mog was not coughing when the bus came, so was able to catch it home again. Where she then coughed and spluttered and drowned, and then went into spasm and cried and complained. And dropped off to sleep, and woke herself up with a seizure. And dropped off, and woke up, and dropped off, and woke up. We're now on the third option as far as safe sleeping spaces are concerned, and she may just be settling. Little Fish is snuggled up in her own bed, apparently asleep until I go to close her bedroom door (that ventilator is LOUD) when I get "You no close door Mummy, you love me". And I? I have had a bath, using the bath salts we were given at the Rosy lunch last week. Lovely. Except they were full of lavendar seeds. Which have now detached themselves from the bath and fastened themselves to my back, like small, sweetly scented tics. I wonder who designed them?

Off tomorrow to stay with friends, so updates will have to wait until Sunday (unless I run into an overdose of uber-geekery and update from their house).

Pray for T, those who do,
Tia

Pray for T

T is the son of an internet friend of mine. We have talked over the years, when she lost her daughter, and later when I lost mine. T has a degenerative condition, and yesterday developed a pneumonia. Today he is in ICU fighting for his life, and the doctors are not sure which way it will go.

I have seen T flourish under B's care. Over the years as he has lost physical skills he has made staggering cognitive gains. He has gone from a boy who could walk to a boy who has difficulties in lifting his arms, but at the same time he has gone from a little boy lost to a young man able to say Mom and request his favourite music.

Please pray for T and B, for the doctors involved and for all who need to make decisions about T's care right now.

Tia

Thursday, 11 December 2008

No more Thursdays!

I am starting to take this personally.

Mog woke up this morning after a whole night in her own bed, first in a while. Lovely. OK, so she woke up at 5 rather than 7 but that's a minor matter, and her ceiling light show plus a spot of Norah Jones fixed her up for another hour or so before her secretions got the better of her and she needed to be in her wheelchair. But she was smiling, happy, keen to participate in the whole choosing a hairband thing, and only slightly put out about the idea of being strapped into her chair and maybe bending in the middle a bit.

Little Fish slept in until after Mog's bus had been and gone, then woke up and had a quick bite of breakfast before we trundled off to preschool. So far, so fairly unfraught. Dropped her off and walked home, hoping to grab some coffee before my next commitment. Sadly my visitor was waiting on the doorstep so I had to share my coffee, so we got stuck straight in to the morning's project - emptying the cupboard under the stairs. I live in a flat, so I have no attic, but my upstairs neighbour's stairwell gives us a nice storage cupboard. Full, as it turns out, of hundreds of medium tena slips (Goldie's), half a dozen sleeping bags, assorted bits and pieces of clothing and old wheelchairs (anyone need a Jay 2 back cushion or the black padded cover for a wheeled commode?), old gaiters and back braces, and sewing supplies, and then finally gold dust, 48 cartridges for our giant nappy bin. Cartridges which are no longer made, so our bin has been standing unusable for six months. It has now been recomissioned, and not a day too soon.

People have asked why Little Fish is Little Fish. Here's why:
After we sorted out the cupboard, we put LF's room back together but with the bed in a different position. It's great this way around - the bed finally sits under the hoist which will be useful as she gets older, and she has more usable play space in the middle. Plus all the things which were shoved stored under her bed are now in the cupboard, so her bed can come down to its lowest height, and she can start practicing getting herself in and out of it. Fun times.

So, that was our morning, child free yes but not entirely relaxing. And just as we were finishing up, I was calculating that I would still have around three hours to sit down and enjoy doing nothing but drink Lemsips, when the phone rang. Not school for once, preschool instead "we think LF is poorly, can you come and pick her up please?"

Abandoning Lemsip and coffee (two separate cups in case you were worried) I struck out for preschool and found Little Fish sitting and shaking on her 1:1's lap. Really shaking, very blue, red hot body and icy cold hands. It is Thursday, after all. Get her home and take her temperature, she's reading the same fever Mog had last week. Wonderful.

Ibuprofen, Paracetamol, the Flucloxacillin she's taking for her staph infection (and isn't that supposed to somehow insure her against getting ill with other things? Seems very unfair to have her getting poorly when already taking antibiotics), water and some vitamins, and she perks up enough to watch the teletubbies for a bit. So we pass a reasonably peaceful couple of hours.

And then school rings "Mog's coughing again and drowning a lot, and we're not happy to put her on the school bus". Excellent. Our bus escorts are not trained to give medicines or medical treatment. Most of the time this isn't too much of a problem; we live about five minutes' drive from school, and Mog should be the last child loaded onto the bus and the first off, which gives plenty of time to give midazolam if she starts seizing on the bus. Can't really leave her five minutes without breathing though if she suddenly needs suctioning. So for two days in a row now I've had to pick her up from school. I'm rather puzzled about how it's any safer for me to collect her and drive her home alone, than it is for her to be driven home by a driver with an escort at least able to watch her drown and stop breathing. I suppose it's one of those "Magical Mother" things. That or they've overestimated LF's ability with a suction catheter.

However, we do get home safely, and Little Fish takes a break from Teletubbies to look after her babies. Elmo baby is apparently very tired, so needed to be hooked up to his Nippy ventilator"There, soon be sleeping again baby".

And then the evening comes. I start to get Little Fish ready for bed, and talk her into her Upsy Daisy pyjamas. Get her nearly sorted when the flucloxacillin finally kicks in - turns out that erythromycin bungs things up but my goodness fluclox gets it going again. A change, and another change, and so she isn't quite in bed when our evening carer arrives, with new carer shadowing.

Cue one very overtired, poorly, muddled and confused little girl. Had I known she was going to be poorly, I would not have chosen today to make major changes to her bedroom layout. In bed but "I want you lie down in bed with me Mummy. You sleep in ere tonight Mummy" and major squawks if I shift away from her bed to do anything else.

New carer, very nervous and somewhat overwhelmed. Experienced carer very experienced, but one of Goldie's carers who only sees Mog now when our main carers are on holiday, so not totally au fait with all her care needs. And definitely freaked by the sudden need for suction.

Mog reacting to a combination of very sore bottom, carer not full of confidence, and Mog's own panic at lying flat for a shower, screeching mightily.

Eventually Mog settles, the carers shower, I sit with Little Fish. Both girls settle to a steady grizzle, so I retreat to the sitting room. And suddenly an almighty scream from Mog at which point I throw myself into her bedroom screeching myself to get the carers to get away from my child, stop drying her hair and step away from her. Undo her straps and feed, and carry her through to LF's room, LF screeching too. Carers follow like sheep, despite my "go away" glare. New carer deeply upset that I think she's hurt Mog with the hairdyer, and despite the fact both girls cry louder as soon as either carer speaks or approaches, I have to go into long technical description of muscle spasms and the way Mog's CP affects her.

Eventually they leave, girls calm somewhat, and I gather Mog up to post her into her own bed. Where she twists up like a screaming pretzel again. I give her midazolam as quicker than diazepam. And she somehow inhales it, and is now breathing white midazolam infused dribble bubbles - like very heady toothpaste. It begins to have an effect, not especially helpful at a time when she really could do with having a good cough. But finally she is calm again, leaving me considering the fact that rectal diazepam may be a better option if she can't do this swallowing thing any more (And I know the buccal stuff shouldn't need swallowing, I'm just cruddy at giving it, alright? Who knew half a milliliter could be inhaled that far anyway?). And then finally I am free to return to the hysterical Litte Fish and reassure her that the strange ladies were only there to help and weren't staying and that I wasn't going.

And so I am sitting in that no man's land in the hall, neutral territory between one shallowly sleepy Little Fish who is beginning to cough up wads of goo all by herself, and Mog who is waking up and shaking off the Midazolam and apparently going straight back into extended spasms. Norah and the light show not cutting it this time, I must go and straighten her out.

And now the door is bolted and no one is going to be welcome until morning!

Tia

PS Edited to clarify the fact that I am entirely in agreement with school that it is not safe for Mog to travel on the bus when she needs suctioning - my frustration is not with school but with the policy makers who have decided transportation staff should not be trained to deal with medical emergencies. And with life in general, really quite a lot actually. Forgive me for not making this clearer earlier on; I was rushing because Mog was beginning to grizzle. Silly me for thinking it was just the Midazolam wearing off, she was in fact sitting in a small ocean of poo, and had somehow managed to get her fist in it and rub it all over the bed, not bad for a child with no voluntary movements. Big apologies and a clean up for her and the bed. My washing machine is sulking now.

Wednesday, 10 December 2008

It's an anniversary


How on earth could I have forgotten? Twelve months ago, we sat in front of the judge and he declared us a family, declared Little Fish and I to be mother and daughter forever and irrevocably!

I started looking into adoption twelve years earlier, it was definitely not a speedy process. I was turned down by several adoption agencies "Too young" (despite being legally old enough), "Too inexperienced" (despite working with children with profound disabilities), "Too single" (not sure what I could do about that one!) "Too weird" (for wanting to adopt a child with disabilities).

Eventually I started fostering. Not instead of adoption, not as a second best at all, but whereas initially I had thought I would adopt and then foster, I decided to stop waiting, and to foster first. And I carried on applying to adopt, now and again, when a child caught my interest. Some social workers were interested, others were put off by the complexities of placing a child for adoption with someone who was already fostering, others were put off by the perceived problems without checking the answers.

And then, finally, there was Little Fish.
Now by the time I got to meet her she was a little bit larger
And by the time she moved in, she was bigger yet
And now here we are, a year after Adoption Day, and I find myself arguing with her over whether or not she grew in my tummy (thank you Sunday School for planting that one in her head!).

I've written my first ever Letterbox Letter, a letter to her birth parents telling them about her year. I've signed my first ever medical consent form (and a number of them since then), rather than having to wait for a social worker to do so. I'm still learning to trust my own judgement without having to second guess other concerned parties. And I'm loving the lack of statutory reviews, the ability to go away overnight without having to inform social workers in writing, the ability to go abroad without a special written letter of consent, and most of all, the fact that I don't have to correct people when they refer to me as Mother.
Happy Anniversary, Little Fish!
Love,
Mummy.

Tuesday, 9 December 2008

Merrily we Google

I appear to be attracting festive weirdos googlers.

Nativity Scene with Fleas. I'm intrigued. Performing fleas? A living nativity with flea-ridden donkey? If you have taken your own Nativity scene out of the attic and found it to be infested, might I suggest replacing it? and delousing your house

Christmas Chaos. Not this year, we are organised. Well, ok, so we haven't actually posted anything out yet, we're not actually going to see very many of the people we need to send presents to until after Christmas, I've got six reels of sellotape and I cannot find a single one of them, and it is entirely possible my head will explode. But you won't find Christmas Chaos here, no sirree!

How to explain 2nd Sunday in Advent. Simple. There are 4 Sundays in Advent. The 2nd one comes after the first and before the 3rd.

And of course no roundup would be complete without my ever present Shuffle Trousers. Please someone explain. To all you Shuffle Trouser googlers, I offer good money (or at least your very own personal copy of one of my Little Fish specials - a close up of her own thumb, taken by herself)Yes people, this picture can indeed be yours and all for the small price of one short explanation. Someone out there must know. What is a shuffle trouser? What are you looking for when you google the term?

Now the girls are asleep and I am full of curry.
Night all
Tia

Monday, 8 December 2008

Just another manic Monday.

"Mummy I not a naughty girl"The jury's out on that one.

Back to hospital today. Routine this time - the long awaited urodynamics for Little Fish. Having been told (erroneously) not to attend one appointment, failed to cancel another one correctly, been misinformed about the date of a third we had been discharged with a nice letter informing me that I was putting my daughter's life at risk by choosing not to attend, whilst I was running around trying desperately to make an appointment. Thankfully all is now better understood. Or mostly - I thought our appointment today was for 1 or 1:30, so turned up at 1 to be on the safe side. Only to be 2 hours early for the appointment which was actually at 3. No, really, we do love hospital waiting rooms.

A nice moment whilst waiting for all the radiology to begin - receptionist answering the telephone "Hello, Children's Ideology?"

A less nice moment - watching the cleaner repeatedly tamp down a full clinical waste bin with one of the yellow "caution wet floor" signs. He did wear gloves to do so and wash his hands afterwards. No one wiped the bottom of the sign though - and presumably this sign is used to warn people that floors have been mopped. Nothing like a good layer of clinical waste to give that nice clean floor an added sparkle.

A deeply satisfying moment for the urology nurse, clinical team and ourselves - the first patient of the afternoon did not attend, so we didn't have to wait 2 hours and they didn't have a wasted slot.

A decidedly nervous moment - the urology nurse noticed Mog, the radiographers were unhappy about having her in the room even behind their screen (which is what we do for xrays at the orthopaedic hospital; I'd not even thought about the possibility of it being a problem). A worried five minutes thinking that this appointment would have to be cancelled and rearranged and our status as nightmarishly unreliable and awkward family would be secured.

And a very relieved moment; one of the play staff from the day surgery ward was free and able to come down to sit with Mog out in the waiting room.


Urodynamics consists of passing various tubes into various orofices and measuring pressures whilst pushing contrast dye into the bladder. Smiles all round, serious mutterings from the lady Little Fish Christened "Dr Wee-Wee", and an hour of distracting Little Fish and trying to keep her lying still on a bench as she proved conclusively that her bladder will not hold more than 20mls. Which is odd, as ultrasound showed 50mls.

However, we came up with a plan - the first step in what will probably be a three year process "operation continence". No changes until after Christmas, at which point we will be starting LF on a medication designed to help her hold onto urine.

Back out to the waiting room to a somnolent Mog and a bored play person who had had lots of fun things to do if she'd woken up.

Home then, and onto the complexities of other medical stuff - LF is starting Flucloxacillin to treat the latest growth on her gastrostomy. Grumps at the process here. Not our usual GP doing the prescribing, so prescription sent on Friday to the chemist which doesn't deliver rather than the one which does. Queued today to collect it and the pharmacist seemed surprised we wanted it which seemed somewhat odd. And now we have a medication which must, according to the pharmacist, be given four times a day, either an hour before food or two hours after. LF wakes up at around 7, has breakfast and then a tube feed one hour later (any closer together and she vomits). She goes to preschool at 9.15 and has a snack at 10. 30, tube feed at 11.30, lunch at 12.30, tube feed at 2.30, tea at 4 and a final tube feed at 6 before bed by 7. I see no empty stomach availability there. Dosing her in her sleep is not an option either; her gastrostomy site is so painful any touch sends her through the roof, and the thought of leaving the extension tube attached sends her into orbit. It could be an interesting couple of weeks.

Good news too though - Mog finally woke up at about 5 tonight. She even smiled spontaneously! And managed a whole twenty minutes lying on her back - first time in a long time she's managed to lie down for anything longer than a quick pad change and wipe over. She couldn't manage that again later on this evening so is now snuggled up cosily in her armchair again, but she did it once, that'll do for now. If she wakes up tomorrow morning she may even end up back in school which would be quite exciting for all of us.

And now I have just realised that what I have been thinking is thirst thirst and more thirst is actually a sore throat. But Mummies don't get to be ill, so I must go and try to sleep it off.

Night all
Tia

Sunday, 7 December 2008

Just to keep life interesting

Not that life around here gets the chance to be boring very often.

We've had a busy few days. Friday was the day for the ROSY Christmas Lunch. Last year's Christmas Lunch was my introduction to the ROSY support group. It doesn't feel like a year. Mog was out of school so we all went, carefully angling Mog so her coughs wouldn't land on the more vulnerable children there. The committee had arranged presents for all of us, bath salts and other smellies for the Mums and nurses, plastic raincovers for the children. And then the two Dads who turned up were presented with the same frilly bath salts plus a hastily organised bag of peanuts from the table of nibbles. A delicious meal, and again we managed to baffle the committee members by being cheerful and generally having fun, always useful.

Yesterday Mog had a visit planned to her extended family. We rearranged so her family came here instead, so three generations of the Mog clan came and had fun as Little Fish alternately cried for me and spilt glitter over the floor. Fun times.

And then life got funner. Mog got coughier and coughier, her stridor turned into a train whistle, her breaths got faster and faster and her saline wasn't doing anything to settle it down. So we called the Out of Hours Doctors, and then we were visited by the men in green. Mog was pleased to see them and smiled on cue as they slapped a stethoscope across her chest. Little Fish was even more pleased to see them, especially when she realised we were going to take a ride in the "Gammybus" as she Christened it.

One panting wheezing stridoring struggling Mog still with the strength to resist the salbutamol nebs and getting increasingly cross as well as increasingly tired. One Little Fish ecstatic over the sirens and flashing light and "gammybus go wheeeeeeeeee".

Arrive at hospital where a team of doctors are waiting with all kinds of patent airways and devious appliances; it is with an air of disappointment that they decide these won't be needed. One chest x-ray which shows she doesn't have a chest infection at all, one shot of Dexamethasone and she started to settle. At which point Croup became the official diagnosis, the world relaxed, and we got to sit on the hospital trolley being observed for 3 hours 55 minutes before being discharged home.

Mog by this point was demonstrating that she was perfectly able to make her feelings known to the world, screaming at the universe in fury at being on the trolley. Little Fish is alternating lying on my leg pressing her head into my bladder and sucking her sleeve with sitting upright and demanding "Wot you doin'?" to every nurse who walks past our bay. This is fine when they are throwing gloves in the bin or grabbing a drink of water. Slightly impolite but still acceptable when they are drawing up meds for another patient. Downright intrusive when they are catheterising the old lady next door on one side or bagging the dead man on the other. Privacy is underrated. I am sitting on the trolley (doctor's request - Mog breathes better when she's sitting upright and she can't sit upright unaided especially on a 2 foot wide trolley with no pillows and a concrete mattress). Mog is on one leg, screeching. Little Fish on the other leg being embarrasing. It was a long few hours.

Little Fish is a caring little girl though. With every screech "Ok Mog Mummy got you, you be bit better in a minute." And to every passing medic "Mog bit poorly. Got cough and dridor."Very sweet.

Finally released - she doesn't need oxygen, she doesn't need IVs and we can do the rest at home. We have one emergency dose of the Dexamethasone should she need it again, and we are off.

Home and both girls asleep by midnight. Now it's 11AM and Mog has just been woken by someone kindly dropping off a Christmas Card after church. Little Fish is still asleep, and whilst half of me is enjoying the peace the other half is thinking I really should wake her up if I'm going to stand any chance of getting her back to sleep tonight.

So if anyone has any explanation for masses of secretions in the lungs without an infection, preferably something we can treat fairly easily, I'd be grateful. Meanwhile we're off to Mum and Dad's for lunch in a while, so I probably ought to go and make Little Fish decent.

Tia

Thursday, 4 December 2008

It must be Thursday

Ah Thursdays. I've mentioned them, I'm sure. That one most precious day of the week, where Little Fish stays all day in pre-school and I have a whole five hours to myself. Well, apart from the many weeks when Mog is ill, the weeks when we have hospital appointments and visiting therapists and minor surgery and major mayhem. Counting back in my diary I see I've managed a whole three since they started in September. Never mind; I have today, and I have another two before the end of term.

Good in theory, right? Next week I have signed up to a commitment which requires me to be child-free; it's definitely a good use of time but it's not necessarily what I'd choose to do on a lazy Thursday. I picked Little Fish up from preschool yesterday lunchtime and read a note in her book reminding me that she finishes on Wed 17th. That's the next two gone then, better appreciate today, my last chance for a break this year.

Rewind then to yesterday, when Mog's bus arrives home from school. "She's a bit unhappy" commented the escort. A bit unhappy, once Mog has been lowered down in the lift, turns out to be a deeply distressed Mog, A Mog bright red in the face, wheezing, stridor, sixty breaths a minute and roastingly hot to the touch. Note in the school book "She has needed a lot of suctioning today" - no, really? Either she's thrown the speediest fever in the book or she's been heading towards really quite poorly for a few hours now.

I go in search of a thermometer. We have six - one feverscan forehead strip thing, one fancy tympanic one, one more basic tympanic one which tends to be staggeringly inaccurate but which I can't bring myself to throw out until I've used all the shields for it, two digital ones, and a basic and ancient mercury one. I'm not a collector, they just have a tendency to disappear at crucial moments. And now is no exception. Despite using them on a regular basis, the only one I can now locate is the feverscan one, buried in a first aid kit so little used that the first item to surface is an old style ten pence piece to make a phone call. Why yes, I was a Brownie, how do you come to ask?

Deflecting the coin and discarding the leaking antiseptic wipes, making mental notes to restock the first aid kit with some in-date supplies and plasters which haven't lost their elasticity and in fact mutated into alternative life forms, shuddering quietly as I attempt to separate them from the crepe bandage to which they have bonded, I finally make contact with the forehead strip and extract it from its box.

I place it on Mog's forehead. The little lines of colour shoot up from 35, 36, skip 37 and 38 altogether, whizz on past 39 and up to 40 before disappearing altogether. The feverscan rolls itself up at the edges and begins to smoke gently, wimpering in pain at the contact. I flatten it with a smart slap, tell it to sort itself out and earn its keep for once. It points out that its keep has in fact consisited of spending the last several years locked in a box with a packet of mutating plasters. I apologise and put it down before anyone else notices me arguing with a thermometer.

Wrapping the girls up I walk them over to the local chemist shop where we buy another digital thermometer to add to our disappearing collection. Mog shoots fountains of clear dribble as we queue, scaring the pharmacist somewhat, disconcerting the other queue-ers as I slurp it up with the snot hoover, but finally agrees that her breathing could now come back to something a little more normal. We then trudge home.

As we walk home, I am thinking about our missing thermomters. I suspect they may all be on strike for better pay and conditions. The digital ones demanding decent lithium batteries, the tympanic ones pushing for better quality shields, the rectal blue one begging for shields of any kind at all really, the mercury one pleading to be allowed to retire on a decent pension. This brings a worrying thought, if all feverscan one knows where they are, and what I have just been doing, will he round them up and organise a picket line? Will the new one get into trouble for working? Will we be surrounded by a minature thermal army as we re-enter the house? I am in th eprocess of removing Mog's blanket to get a reading before we are in site of the house just in case, when it occurs to me that probably this won't in fact happen, and that I really might benefit from a decent night's sleep.

We get home, no thermometers to be seen, and settle back in. Mog's temp under arm turns out to be 38.8 (102 for the fahrenheiters in my readership), but the walk has shaken things loose and she seems much happier. Paracetamol, ibuprofen, a saline neb to loosen things up further and she settles to a poorly but stable evening.

So that was yesterday. Today is Thursday, and it was obvious from the moment she got off the bus yesterday she would not be in school today. Instead we got to see the doctor, who says she has a "mobile chest infection". Not a term I had heard before, not a term my friend the respiratory nurse had heard either. T suggests it is in fact Walking pneumonia, K suggests a chest infection with a bus pass. I prefer K's theory. If only because I could take Mog to the bus stop tomorrow, make cough in the general direction od the next approaching bus and hopefully it would take the hint and hit the road.

So, more antibiotics. 15 minutes after her first dose, Mog began coughing green, so that was a handy indication that this is in fact the problem. Back to saline nebs, lots of chest pounding, suction, sleeping upright in an armchair, and general "I'll cough and hold my breath if you leave the room". Marvellous. The results aren't back yet from the girls' gastrostomy swabs (they're both looking manky at the moment). We get the results tomorrow. What are the odds on whatever it is actually being sensitive to the antibiotic she's currently taking?

And now she is asleep, so I should be too. Goodnight,
Tia

Wednesday, 3 December 2008

Questions, questions

Some questions people have asked me:

Where did you get that light show thing and what is it called? It's a Shadow Ceiling Light, and we bought it from Argos. It's made by the Lava Lamps people, but I can't find it anywhere online in the US - doesn't mean you can't get hold of it though!

Do you know of any resources to explain Christianity to children with learning disabilities? Sorry, this is one I was asked a while ago in the comments and I've lost the comment itself - I apologise. And the answer is no, not really - we were given the Lion Story Teller Bible

which the girls quite enjoy. When we were at New Wine, the Our Place team had a fantastic programme which the girls loved. I have a feeling they may offer some outreach training too, but I'm not sure about that. I'd be interested in anything other people have come across.

What happened to Goldie? Goldie moved on from me to a home which she could share with other young adults with profound and multiple learning disabilities. Shortly after moving into her new home there was an accident involving very hot water, she was badly scalded and a few days later, she died. The carers working with her at the time were not to blame. I wrote this and then this shortly after her accident, and for various reasons I still can't go into much more detail than that.

I've often thought about fostering a disabled child but how do I go about it? I'll answer this one for the UK folk if anyone else cares to ask, but this is one which has come from my US readers. And my fellow blogger Michelle has answered this fairly comprehensively by writing a book on Foster Parenting The Medically Fragile Child. So she's probably a better person to ask!

Tia

Tuesday, 2 December 2008

Pre-empting Christmas

I'm liking this. Doesn't look like much, does it? A noise maker perhaps? Telescope? Torch? Hmmm my socks are filthy, kindly ignore that.

It's Mog's Christmas present. And it does this. Pretty, isn't it?
It arrived a couple of days ago, and I opened it up, checked it had the right number of parts, and posted it back into its box. And then Mog woke up, and started squawking. And being generally miserable and revolting. So I took it back out of the box again and set it up above her bed.
And she stopped squawking, and started smiling, and settled down for long enough to listen to her music, and fell asleep again.

So it's playing a nightly light show for her now. Which is great - anything which distracts her long enough to trick her into sleep is just fine by me. But now she needs something else to unwrap on Christmas Day.

Or perhaps that was her plan all along.
Tia

Monday, 1 December 2008

Being Organised

I am still learning my place in this family. Slow learner, obviously.

"Come on Mummy, it's tidy-up time now. Bit messy here Mummy."
"You sit down there turn round to table. Turn round, sit DOWN Mummy."
"Mummy Imi wants you NOW"
"You do washing up now Mummy"
"WIPE IT"
"Mummy my glasses bit manky, you clean them Mummy."

So why is it, after a day spent in tidy-up time, washing, wiping, folding, sorting, organising, and cleaning, that I am sitting here surrounded by pieces of jigsaw puzzle, bits of glitter and Christmas confetti, three blankets, two cats, and a partridge in a pear tree?

Tia

Sunday, 30 November 2008

Advent Sunday.


Oh, Come, Oh, Come Emmanuel

Oh, come, oh, come, Emmanuel,
And ransom captive Israel,
That mourns in lonely exile here
Until the Son of God appear.
Rejoice! Rejoice! Emmanuel
Shall come to you, O Israel!

Oh, come, our Wisdom from on high,
Who ordered all things mightily;
To us the path of knowledge show,
and teach us in her ways to go.
Rejoice! Rejoice! Emmanuel
Shall come to you, O Israel!

Oh, come, oh, come, our Lord of might,
Who to your tribes on Sinai's height
In ancient times gave holy law,
In cloud and majesty and awe.
Rejoice! Rejoice! Emmanuel
Shall come to you, O Israel!

Oh, come O Rod of Jesse's stem,
From ev'ry foe deliver them
That trust your mighty pow'r to save;
Bring them in vict'ry through the grave.
Rejoice! Rejoice! Emmanuel
Shall come to you, O Israel!

Oh, come, O Key of David, come,
And open wide our heav'nly home;
Make safe the way that leads on high,
And close the path to misery.
Rejoice! Rejoice! Emmanuel
Shall come to you, O Israel!

Oh, come, our Dayspring from on high,
And cheer us by your drawing nigh,
Disperse the gloomy clouds of night,
And death's dark shadows put to flight.
Rejoice! Rejoice! Emmanuel
Shall come to you, O Israel!

Oh, come, Desire of nations, bind
In one the hearts of all mankind;
Oh, bid our sad divisions cease,
And be yourself our King of Peace.
Rejoice! Rejoice! Emmanuel
Shall come to you, O Israel!


The day got better. Two happy girls ready for an Advent Sunday Parade Service. Lots of small Rainbows and Brownies marching through the church with flags and banners. Wildly overexcited children now officially within reach of Christmas. Slightly less enthusiastic parents realising the countdown has begun. The first red candle lit and burning brightly.

A good lunch with Grannie and Grandad, and a prowl around a garden centre with the traditional annual purchase of a new decoration for the Christmas tree. Tin bells this year.

And now home, and ready to think about Advent properly. Ready to think about making time to prepare, not just by wrapping presents and chopping vegetables and getting stressed about making postal dates and mince pies, but to prepare for the coming of the Christ - Child and Adult. Ready to think about ensuring He is welcome in my house and in my life.

Our Advent Sunday service is always a family service, always a Parade service (meaning that the Guides and Scouts and all the junior versions of the same come in uniform, bringing parents and reading shy prayers and marching through the church), and always a toy and sweet service - children come bringing gifts which are then distributed via a local children's centre. It's a nice way of encouraging the children to think just for a few minutes about the giving side of Christmas, in amongst the wishlists and wantings. It's a nice way of bringing in families who don't ordinarily come to church (and one day the worship group will understand what we mean when we say "please play something all the children will know, not just those who come every week. But that's a separate issue). And it's a nice way of formally marking the beginning of Advent, pointing out that it isn't about a daily slice of chocolate from the first of December but that it does actually have roots in a far older tradition.

Today Our Vicar chose to illustrate his sermon by sharing invitations with the congregation.

"You are invited to a banquet by the Lord God Most High". Every child (and most adults) caught one and had to decide whether they were coming to the party or not. Little Fish of the literal mind is now convinced the vicar is throwing a party and wants to know when it is and where and whether or not there will be chocolate at it. I took her up to the vicar after the service and asked him to explain. "It's one long party, and it starts now, if you want it to" was his response. Little Fish is very happy about this but still rather confused.

Tomorrow we will start to explore this

and each day, we'll be reading the next chapter in the story.

As each story is read, we will hang it along a streamer and so as we go through the Christmas Story we'll decorate the house. I wonder if I can get away with just that as a decoration and not bother with anything else?. I would have unhooked the first to give a sneaky preview, but this happened

and so I couldn't.

It's been a good day, a busy day, but a nice ordinary mainstream busyness rather than full of matters medical. I'm looking back today as well as forwards - it was a year ago today that we buried my Goldy. Today was the sort of day she'd have enjoyed a lot. Potential to cause mayhem at church followed by a good meal out, lots of fragile ornaments to grab and test for hidden chocolate, people to shout at or ignore, a candle to blow out, and then time to watch a favourite video before bed. I think she'd approve.

Tia

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