Arthur's Inner Circle

Post doc

2012-01-26T14:39:00.000Z

The antihistamines seem to he helping, so that's good news - means the itching isn't liver related :-)

Get you car off my bike

2012-01-21T22:32:00.000Z

The boys' school is on a split site. Registration and years 1 & 2 are in one place, and years 3-6 in another. In between them lies a major arterial road. The council have resisted installing a crossing at the main junction between the sites for some years now, but have eventually given way and agreed - as other major roadworks are under way - to put in a zebra crossing. It's about time, and I am honestly surprised that a child has not been killed before now. Every day, after dropping off Arthur, I launch myself like some luminous suicidal lemming* in to the traffic, to allow Sylvan to wheel his bike across. It can take up to ten minutes to ford the road, and no exaggeration.
This isn't really that relevant to my gripe, but sort of, because it took place at the same junction. I was waiting for my daily launch, only it was slightly different because Sylvan was getting a backy on my bike, instead of being on his own**. As we were waiting at the crossroads (to go straight over) a woman pulled up behind us, and was so close that her bumper was touching my rear cogs. I turned and pointed, mouthed "you're a bit close!", and expected her to back up a few feet. Instead she gesticulated at the road ahead and, god knows why, rolled on in to us. And I lost it, and screamed and swore, because even though it was all happening in slow-mo her car was crushing in to the bike with me and Sylvan on it, and one's not particularly rational in those situations.
There was no resolution. We crossed moments after, and she zipped off to the right. What do I do? In my daydreams I wait on Monday and block her exit from the school drop off, which is a dead end, and jump up and down on her bonnet while telling her what an irresponsible and abhorrent individual she is. If I am well organised I will have a d-lock and will shatter her windscreen. Then I take a photo of her numberplate and report her to the police, whereupon she is found to be driving without a license/insurance/whatever and so has to walk a million miles to school every day while cars ignore her efforts to cross and block her way on the pavement***. And then I think I am a horrible person, she probably just stalled and made a mistake. But if so, why the hell didn't she say sorry? If I rolled in to a bike in the car I'd be mortified.

* high vis jacket, deranged look
** he'd uncharacteristically fallen off it four times the day before, and so needed a break from pedalling
*** and then I am arrested for public disorder and oh... what... damage with criminal intent? public upset? being very grumpy? -- something like that. Then they bang me up and take the children away and I cry forever.

Perhaps I might just let it slide and hope she learned from the experience.

Doctor Doctor

2012-01-18T21:44:00.000Z

The doctor was very good and really spoke to Arthur and involved him in the consultation, and Arthur responded enthusiastically by giving a detailed description of how we came to find that we had nits and what we had done about them. At this point I intervened to let Dr know that no, we weren't really there about the nits, and Arthur got on to the itchy bit. He has scratch marks and what look like little friction burns in some of the places his fingers roam to. The plan is to give antihistamines for the next few days and if they don't help then take bloods on Monday. Doctor is young and so hopefully not too far out of a hospital placement that required regular practise, and prescribed ametop for us to apply beforehand. The best result will be if the piriton stops the itching, because it will mean it's just a hangover from the pox and, perhaps, a psychological roaming itch from the nits. There aren't any other symptoms suggesting liver trouble at the moment.

Bear with me please

2012-01-18T14:57:00.000Z

While I fiddle with the layout and design. It's not going to be any great shakes but I was sick of the old baby-poo colour.

Post-pox pests

2012-01-18T14:45:00.000Z

Arthur's been itching pretty badly since the pox departed. Back, legs, arms, head. He complains of waking in the night and being uncomfortable in school. I checked many times for nits but couldn't find it, but yesterday did it with a nit comb and there it was - our first infestation - so armed with lotion from an amused friend (who has a daughter and is ergo a nit pro) dumped the boys in the bath and combed them both out. Turns out Sylvan has nits and cradle cap, even though he's 5. I am wary of combing it off because he still has a bald spot the size of a penny where I picked some off when he was an infant.
Prior to the nit discovery I'd made a GP's appointment for the itching, and so hoped it could be cancelled. When I spoke to Arthur about it though he disagreed, because the other itches are bothering him, so we'll go and talk it over. Perhaps some ursofalk. And some more nit lotion, for me. Itchy itchy.

Seeing as it's my day off...

2012-01-13T11:42:00.000Z

...and I am shirking the housework, here are the boys' latest school photos (from the autumn).

Their heads aren't exactly the right shape, but near enough. You can see how one of Sylvan's pupils is still a bit larger than the other sometimes. We got a new camera but have now lost the battery charger and USB cable for it *sigh*.

It was Mike's 40th birthday this week, and very lovely it was too. We painted a happy birthday sign on the cycle path outside his school with chalk paints which surprised him, and as it hasn't rained since is still there :-) He's off to the London Boat Show this weekend so I have made him a badge saying Boat For Sale to try and shift the blessed yacht. If you'd like to buy it* please do get in touch, and soon, 'cause it's sinking us, and fast.

* 30' 1974 Scampi, good conidition, currently in Falmouth, Kent.

Note to self

2012-01-06T14:16:00.003Z

The internet is a doom-sayer. If you ask it when you're going to die, it will say very soon, horribly, and with all these side effects. Do not ask the internet too many questions, especially not about your children or your bees.

(In fact I did just google that, and it gave me the number of seconds remaining until my likely demise. Cheery, see?)

Back to reality

2012-01-03T07:01:00.002Z

Almost. School tomorrow for the boys, but Mike went back this morning and has a 5-lesson day awaiting him. I spent the night in complicated, repetitive dream sequences that all involved having to get out of bed, then had to do it all again at 6am. It's 7am now and there's a strong wind blowing outside, making me worry about the bees. Of dreams and bees, I had one a while a while ago (a dream, not a bee) that we went to see them and the bushes around the hives - which are in a small copse with hedges - had been cut down. Soon after we went to see them and it was true, which was quite spooky. I had told my mum about the dream before we went though which was pleasing, 'cause it's always hard to prove your psychic powers retrospectively*. Anyway, where was I... ah, here's a good website for keeping hive records. I don't know yet how I'll get on with it, but kind of the developer to make it free for people like me who have only a few hives and no smart phone: www.beetight.com. The British Beekeepers' Association Spring Conference is on in April and I plan to go to it.

Last night in my dreams I also realised what to get Mike for his 40th birthday next week. Perhaps I should give up guest house management and fantasies of a job in the environment sector, and set up a phone line instead. Ask me your question then ring back tomorrow for the answer from my dreams. Only £3.50 a minute for the privilege*.

We rang in the New Year with no great style, but it was nice nonetheless. I went to a party earlier in the evening and planned to swap with Mike so he could go later, but it finished at 11pm, so we were at home for the bells. Possibly I was even already half-asleep for the bells. I am full of good resolve for 2012, so much so that I have started to wonder if I am pretty shit at most things. If one's resolutions include sweeping generalisations of all of the following then there's quite a lot of room for improvement: be a kinder, more patient mother; use my time more effectively; be more economical; eat better and more regularly; keep on top of the housework; don't spend so much time on facebook playing scrabble; be more sociable; learn more about the bees and do it all properly; get the allotment back in shape and improved, and the same for the garden; less wine, more water. I have a sneaking suspicion that the latter is probably key to all the former. See what I mean? - that list is a pretty damning indictment of my current state of affairs.

Boys are up. Had better look lively.

* no, of course I don't really think I'm a psychic.

Pox

2011-12-29T20:20:00.005Z

Happy Christmas! Ours has been neatly sandwiched between bouts of chicken pox: first Sylvan in the last week of school, and now Arthur, who started looking ropey on the way home from Wales. Pox is a bad thing to get if you're post-transplant, and this had somehow translated in my head to being a bad thing for livers per se. So I had been avoiding Arthur catching it it in a passive sort of a way, because although I knew that really he'd be better off having it and developing immunity, I had also been assuming that if he did get it he would crumple in a little yellow heap and be slapped on the transplant list anyway. We're three days in and at 80+ pox now, and there's no sign of that, so one more irrational fear laid to rest. Touch wood. Poor Sylvan missed all the end of term fun - his Christmas party and getting to be not just a shepherd but one of the only two moving shepherds in the nativity. We played a lot of junior monopoly that week, so it was a relief to finally be able to give him the adult Oxford version and play that instead, even if it does last for bloody hours and have several inaccuracies that annoy me*.

Between the pox Christmas was good. We went to Wales to visit Mike's family, and did the usual things the boys love of going to the beach, feeding horses and the like. The weather was pretty rubbish though, and it's dark noticeably longer than it is down here.

* Walton Street is mis-spelt Wolton Street. Oxford & Cherwell Valley College is still labelled as the CFE. The albeit stupidly named Oxford Espress bus service is put as the Oxford Express. The Ashmolean and the Randolph have been put as separate properties but are in fact on the same road. It's got an Abbey National sponsored square even though they've gone bust.

Pre-Christmas

2011-11-22T22:50:00.012Z

This is going to be quick - quick! I tell you - because our computer is now in the front room and the front room has no heating and is bloody freezing. Our friend Benny calls it the Cold Room. It shouldn't be cold 'cause it's at the front of a south-facing house, but the open chimney and single pane windows may have something to do with it.
I'm writing this entry to get a few things down before we are subsumed by Christmas (= Wales), and because although what I'm supposed to be doing is putting stuff on eBay, I can't because the long-awaited new camera's battery is flat and I can't find the charger. Excuses excuses.
So... news. Probably best to start with poor little Lightning, who was attacked by a pitbull-type dog in the first week of November. I keep mis-typing it as attached, but that's probably just as fitting. Damn thing locked on to her back leg and wouldn't let go, and it was awful. Alan (father) and I had been walking the dogs round a local nature reserve and it came out of the blue, this big brute of a dog who wouldn't let go. When the owner finally detached it she went straight to the vet for an hour's general anaesthetic and patching up. I've not yet heard back from the owner about the vet's bills, and was pretty dismayed the police and the RSPCA's assertions that they can do nothing unless it attacks a person.
Two and a half weeks later I took Lightning, Maisie and the boys out properly for the first time post attack, and within a minute of arriving in the park she was attacked by a greyhound. It was tied to the children's play park fence and she went to say hello to it, ergo it is technically her/my fault. The owner had left the dog unattended while supervising his young son in the play park. It's apparently done similar before but was not muzzled. I didn't weep, much, but I did nearly pass out twice in the vet's. Lightning gained two metal staples, followed a few days later by an infection, and a few days after that by surgery to clean out the infection and remove dead skin. Bleurgh. She's okay now, thank goodness, and hopefully it will never happen again. We must rigorously train her not to be so friendly :-( and also invest in pet insurance.
I don't know that we have much other news and my feet are freezing, so that'll do for now.

Guy Fawkes's night

2011-11-05T19:10:00.006Z

I'm never sure if we're commemorating Guy Fawkes et al trying to blow up Parliament, or being foiled... Either way I'm not doing much commemorating, sitting as I am in the horrible cross fire of very loud BBC 6 Music and very loud Strictly Come Dancing, both vying to drown out the noise and stop Maisie going in to a horrified, crazy barking collapse. Mike's taken the boys to South Park for the fair & firework display, which will probably make them deaf but very happy. Speaking of which, Sylvan had his follow-up hearing appointment, following years on from the dodgy ones he had as a baby. It was funny to be going to the hospital with just him, and touching how much of the routine he's picked up from coming with Arthur: solemnly presenting his appointment letter; offering himself up for inspection; the big-eyed hope and expectancy of choosing something in the shop afterwards.

I've put the bees to bed for winter now, barring a little extra weather proofing that's needed for the hive that has a base for a roof*. They stopped taking syrup from the feeders so I've taken them off, and when they're in winter mode proper (at the moment the weather's so mild they're still flying) I'll move them to better positions for the coming spring.

* the hive where there was a queen cell on a super frame that hatched while it was put to one side and I was inspecting the brood box. Queeny must've fallen to the ground and instead of finding her way in to the hive found her way to the bottom of it, where her faithful workers built exquisite wild comb for her, only to be discovered some 4 weeks later by me, trying to combine colonies I had assumed were queenless. They've still got their wild comb, which I'll try and get a picture of before I dismantle it in the spring. Here's a picture of how it looked when a friend's bees did a similar thing:

They build the comb exactly east-west, facing south. It was figuring out the size and importance of that little gap between the combs, the bee space, that led to the design of modern hives to harvest honey.

Nurse No or FFS, Nurse

2011-10-28T19:34:00.006+01:00

Arthur had his flu jab on the Wednesday of half term. We talked about it beforehand, and in the waiting room I took his arm out of his sleeves, because last year this was a major battle. I thought we were doing well, but the warning signs were there in the red blotches that blossomed on his cheeks. It's really shitty, to have to make the decision to put him through this, because the alternative is worse. But there are also much worse things in the world.

Anyway, we got in to the nurse's room, and Arthur asked her if he could have some cream to make it easier. "No," she said, "because it would take half an hour"*. Ahh... the realist nurse. Deep breath. Maybe, I asked, there was a quicker cream we could use? And reader, I winked, a proper good big stage wink. Nurse please humour this child. Blank nurse. Please, help us, nurse. Perhaps, I ventured, some savlon or sudocream? - with another massive wink (surely she didn't miss the last?).

"Well! I see what you're saying, but I couldn't inject through THAT, could I?!"

No, nurse. Nurse, no. You couldn't. But for heaven's sake, you could rub a little bit on one part of his arm, and inject a centimetre up, surely. Nurse, have you no compassion, and no imagination? Nurse, is your heart dead?

Next time I tell you, sod the nurse, we'll go on our own special trip and buy our own special cream, and nursey we'll put it all over both of his arms, and it'll be our special trick, and I reckon there won't be half the red blotches or the fighting or the dreadful dis-empowered weeping. Damn you nurse, there's enough shit in this world already.

* any anyway, numbing cream doesn't work for intramuscular injections, so your reasoning is pants. So there.

It's half term

2011-10-24T21:22:00.004+01:00

Hah, I have recently set up a blog for our street's Residents' Association, and nearly posted this there by accident! Whoops.

Where was I...

Still no camera and so no photos, I'm afraid. On upside the boiler is fixed, the car's insured, Mike's boatyard fees are under control, I've established that I'm not eligible for any sort of working tax credits, and have successfully argued with the gas and electricity suppliers. My other computer's been rescued from the brink of death and we bought this refurbished laptop for work (annual accounts loom). Oh boring, expensive week, I am glad you're over.

It's half term now and the boys are on good form. Mike's nicked off to Dartmoor to walk and camp with an old friend from Germany (lots of the best friends come, or at least arrive, from Germany these days) and the boys and I have been holding fort. Sylvan has spent today plastered in Cars stickers, attempting to flog them to whomever he can. He racked up about 5 sales (including one to our prospective lodger) and one trade for a chocolate. By the end of the day he was giving them away for good behaviour, and I got 3 for that, so there. The only sticker he wouldn't part with was the Cars logo, which was at the top of his shirt "so people know what kind of stickers they are." Quite rightly he's keeping it until all the others are gone. I have high hopes for this little one; mostly that he'll keep me in my old age.

We never made it to church last Sunday because Sylvan slept in to 10am, and I don't like to wake them at the weekends. We made up for it though, as Mike and I went to Evensong and Formal Hall at Merton College, courtesy of current charming lodger. At school they had a visit from the Bishop of Oxford to bless some restored and newly installed stained glass windows. I feared they'd find it terribly dull but the Bishop was, apparently, a hit. "One strange thing though," reported Arthur, "he was dressed as a shepherd! With a long walking stick and everything!"

On Saturday we braved the Ultimate Picture Palace Kids' Club for our first ever cinema outing, to see Arrietty. It was thankfully dubbed and beautifully drawn, but gave Disney a run for their money in the crap representation of mothers stakes. Arthur made it through the whole thing, but after an hour Sylvan was asking loudly when the lights might come back on. I'm hoping to go and see Melancholia later in the week.

Steve Backshall

2011-10-18T20:10:00.001+01:00

has no taste. And that's all I have to say on the matter.

Flu jabs, dreams, Christmas...

2011-10-13T21:33:00.002+01:00

Next week is flu jab week. I am going through with it because we think it is right for Arthur to have it. I will promise him anything if it will make it easier for him, but what do you promise a boy who doesn't want anything, not even pocket money, because he professes that he is happy enough?

Sylvan fell out of bed two nights ago. As midnight neared I scooped him back in, and he muttered something? What was that? "T" he intoned in his sleep, head lolling, "t is a tall letter." School is apparently doing its job.

Christmas looms. The great joy of summer has passed, supposedly marked at the end by the glory of St. Giles's Fair, but trumped by a late heatwave that sent us skittering back to the river to swim and fish and punt. The diversions of Halloween and Guy Fawkes' night lie between us and Christmas, but Christmas - and specifically Father Christmas - dominated our dinner table conversation tonight. We are going to Wales for Christmas, and the boys were speculating about what would happen should we still be en route at the the time the presents arrived, and it became a dreadful mangle of logic meets theology meets Top Gear.

Tonight Arthur couldn't get to sleep because Sylvan wouldn't stop praying. They are both keen on the idea of God (their school is Church of England) so I have offered take them to church on Sunday, and they have willingly accepted. Please wish me luck, for I have never [really] been to church before, and am more than a little daunted.

The Tempest

2011-10-09T19:15:00.002+01:00

This evening Arthur's choir sang Thomas Linley's The Tempest at The Regal, as part of a concert in aid of Free Cakes for Kids. It's a really beautiful piece of music. You can listen to it here.

Blogger recommends

2011-10-07T20:13:00.003+01:00

that I create label buttons for you, dear reader, so that you can indicate what you think of my posts. It suggests ones such as 'Like', 'Cool' and 'Funny'. Personally, I think that 'You obviously think you're a bit witty' and 'Blimey, that's depressing' are more apposite. And, hey! you can even click them both at the same time. Like now.

ps I have two followers! You plus Hannah + Jenny + Rachel = at least five readers. Thank you <3

RIP, Henny

2011-10-05T12:58:00.003+01:00

The chicken has finally died, which I am more sad about than I expected to be. She was a strange, determined creature, and while I won't miss the poo in the house, I will miss her bok-bokking and stalking about.

Hospital on Monday was a fairly long and tearful affair. Our appointment was delayed by over an hour, and we only saw the consultants for a few minutes (bad times in the room next door). The ultrasound report was read out and some of the words that I could see on the screen omitted - very, for example. It was much of a muchness with the last Birmingham ultrasound though, and as I said before we won't have much use for it until it is repeated by the same radiographer/department/equipment. Taking blood was quite traumatic for Arthur, who has developed a horror of it and fights and weeps and begs :-( He is too old and big now to resort to the pinhimdownanddoitquickly methods of infancy. We had another long talk about it in the cafe afterwards, and I hope that next time it will be a bit easier. That hope will be tested soon enough because it's time for the annual flu jab, again...

For some good news I can report that the bees are doing well. They've had their autumn varroa treatment and have been laying down stores for the winter as fast as we can feed them. I hope to get some pictures of them up soon, once we replace our misplaced camera.

School (again)

2011-09-24T21:35:00.003+01:00

So, school's been back for a while now, and both the boys are happy, thanks be. There was a time around this time last year, and the year before, and the year before, and the year before, that either one or both of the boys were miserable. It generally looked something like this. This year though - touch wood - both are happy. Sylvan reports school days as "brilliant", which I accept without further questioning. On Friday he was crowned Star of the Week out of all of years 1 and 2, for being kind and helpful and trying hard, and for not letting other children boss him about (hah!). He is so small the crown fell over his head and was held in place by his ears, and he smiled a tight happy smile and clenched his nervous little fists in his lap. Today, Saturday, he opted to wear his school uniform. I always expected Arthur, our sickly child, to be eclipsed by Sylvan physically, but Sylvan was a pound lighter at birth and at 5 years old only a centimetre taller than Arthur was at 4. Sylvan, however, is giving us all a kicking with his skills - he can read, write and definitely argue with the best of them.

Arthur has hospital a week on Monday. Our school was recently put in to Special Measures and the headmistress unceremonially given the heave-ho. I wasn't that surprised as she'd been a teacher there since I was a pupil and that is now a long time ago. With the newly installed Head come new policies and guidelines, most of which are fair enough, but I have an unpleasant feeling we may upset her as "you should not arrange non-urgent or dental appointments during the school day, and the school may not to be able to authorise these". In my experience, if you want them to be timeous, then you take the medical and dental appointments you are offered, and I will continue to do so. (Also, isn't time off from school for medical stuff one of the few things that makes it more tolerable? I had chronic ear infections as a child and still remember the post-ENT cake-buying visits with my mother to this place more than anything I ever missed.) On the plus side, Arthur's new teacher is great. He is male, young, enthusiastic, and has very neat handwriting. Rumour has is that mothers-helping-with-reading rates are higher in his class than any other, and that he is soon to be married off to "a nurse, or a woman who helps with babies, or maybe a doctor" (source: Arthur).

Competitive Mother

2011-09-18T19:15:00.005+01:00

There's nothing in the rules about not publishing your entries elsewhere, so here's a sneaky peek of Arthur's efforts for our local Wildlife Trust competition. The edges didn't scan in, but you get the gist of it, and it sort of fulfils my promise of posting a picture of him in his beekeeping suit!:

September

2011-09-13T20:28:00.005+01:00

Operation School is going pretty well. Sylvan's happy, and reporting that days are good - brilliant even - despite suggesting that "it's not really learning, is it?", and professing to remember nothing of what they do. Arthur did need two pairs of shoes, and I recovered my internal hilarity when I realised that the other year 3 teacher's name wasn't really Miss Collision. The split site drop-off is a bit kill or cure, only time will tell.

In beekeeping I seem to have finally found a hobby to replace the relentless low-level, occasionally obsessive, worry of biliary atresia: I read bee books at bedtime. I fret about my bees. I make lists of things that I ought to be doing over the coming weeks, then revise and inevitably lengthen them. I eventually fall asleep and dream bad dreams of bees - last night of finding an abandoned hive, rancid and dripping with foul brood, and trying to keep it from spreading to my other hives. It's not pleasant, but it certainly beats the ones where hot, slippery livers escape from my hands before they reach theatre, and I do love the real-time real-world beekeeping. It is fascinating and meditative in the way that only something that takes all your focus and concentration can be. It feels really good to be learning again.

I am reading Keeping Bees (Green Guide Series) by Pam Gregory and Claire Waring, which is a great beginner/intermediate book. When I can't sleep I hit myself over the head with a hardback copy of the Beekeeper's Bible (Collins).

Operation School

2011-09-01T21:09:00.003+01:00

Please let:

Sylvan cope with the long days;
Arthur not to really need both indoor and outdoor shoes;
Town not to be hideously busy when we go to stop up the uniform/underwear gaps;
The boys get in to a routine before next Wednesday that involves going to sleep at 8pm (not 9.30) and getting up at 7am (not 8.30);
Me not to laugh involuntarily at my children's teachers' names;
My nervous and cardiovascular systems not to collapse due to the split-site 10-minutes-apart drop-offs.

Thank you.

I don't want to see the M6 again for a while

2011-08-30T21:04:00.005+01:00

I went to see sister, baby and all just over two weeks ago. He is small and beautiful with incredibly soft skin and hair, and the fine name of Corin, which apparently means spear but also - to the great delight of my boys - means spider (albeit corryn) in Welsh. I went on the train, six sweet hours of reading and eating and a sneaky can of g&t at 5pm, but returned driving my mother's car, her cradling a broken wrist in the passenger seat, having slipped down a grassy bank on the day I arrived.

Less than a week later we set off on the same route north, Mike and the boys and I, to Tentsmuir Forest. Tentsmuir is a magical place and we are lucky to be able to stay in the heart of the forest and just next to the beach in an old salmon fishermen's bothy. There is no electricity, no running water, a composting toilet hidden in the gorse, and when I arrive there it feels as though my heart opens out with relief*. The boys love it, building a fire every morning to cook breakfast on, and spending hours exploring and playing. There is even an outdoor hot bath from which to watch the stars, once the last dog walkers and bikers and joggers have left. Sadly, the only one of us who had a rubbish time - on account of having too good a time to start with - was Lightning. She ate something exciting on the beach on the second day, and as a result spent a stint in the local vet's, at considerably more per night than we spent on our honeymoon. She was quite frighteningly ill, and had it not been for their care I am not sure she would have made it, so we are indebted (but only emotionally) to them for their care, especially Will Goad who was absolutely lovely, even when she threw up all over his shiny table.

Right, I'm going to have to stop. I started going through old posts to see if there were any pictures of Tentsmuir to link to, and got lost in a little trance of nostalgia. Let me leave you with some news of Alan: he has made it to Tel Aviv, where he is in a hotel waiting for his paperwork to be completed, with a view to crossing over to Gaza on Sunday. In the meantime his ipad has been stolen and he's discovered he hasn't any travel insurance after all, so he is a little glum, and I hope things start to look up.

* Not when I arrive at the toilet after a long journey, you puerile minded fool - I am talking about the mystical peace of the woods and the sea, which give space for the soul to blossom.

Father to Gaza

2011-08-18T19:16:00.005+01:00

My father Alan is off to Gaza for a year, to work in a secondary school. Good for him for being so brave, but I am not feeling very brave about it. He's just finished two years in Dubai and said it would be a good antidote. He is an enormously talented teacher, unable to find work in the UK, probably partly because of his age but also because of his teaching experience. Trainees are so much more... economical.

Alan speaks 16 (or is it 17 now?) different languages and used to teach as an EAL* specialist in Paddington, London. They took this large school - on three valuable building sites and with a majority of Muslim pupils - and split it up in to two academies. One is now run by a building company, and the other by an evangelical Christian organisation. PFI is full of such quirky coincidences!

After the conversion his department was cut. Who needs EAL in a school with one of, if not the, highest attendances of refugee children in the country, and where over 42 different languages are spoken? He was eventually forced to take redundancy.

Now it seems that London's loss is Palestine's gain. Alan, we love you and hope that you stay safe during your time there x x x

*English as an Additional Language

I wonder...

2011-08-16T22:50:00.003+01:00

Should I blog about some of the really shitty things that happened? The ones that still make me angry? The missed referral letter. The failed epidural. The nurse who took the piss out of Arthur's name. The x-ray team who insisted he bump through the hospital (see: failed epidural). The "friend" who, upon our return from Birmingham, so pretended nothing had happened that I felt I was being silly and couldn't even mention it. The consultant who held forth in front of me and his students, condemning Arthur to an inevitable degeneration and transplant. The nurse who wouldn't let me hold him when he was feverish and screaming. Is there any point - would it be therapeutic, or just become a hobby, wallowing with wine and retrospective misery? And would it just open the floodgates for a massive whingfest? (You know, I had this boyfriend once when I was X and living in X, and he...).

Ah, I feel better already :-)

Mike took Arthur fishing...

2011-08-11T12:32:00.004+01:00

...and they caught a two foot pike! Alas no pictures, but it's one of these --

-- the fish I don't think about when we're swimming in the river, along with the signal crayfish and dead bodies.

Bee disaster

2011-08-09T16:45:00.004+01:00

Bees, bees, tricky things to help and to second guess. I might give up and start keeping hoverflies instead. Two days ago I shook off my littlest hive at the edge of the convent garden, because it was queenless and had laying workers. The idea is that only sensible worker bees will manage the flight home, and you will be laying worker free and able to start whatever it is you want to do next with them (in my case, uniting with a queened hive). However, when Arthur and I went down last night to do this we found... no bees. Not one. No incriminating bodies, even. It seems they'd had enough and had gone elsewhere, hopefully in to our neighbouring hives. Lots of wasps around being menacing bastards, so we have stopped up the other hives' entrances to try and keep them out.

Of my two other remaining hives, the one I hoped had a lurking virgin queen is looking increasingly like they don't after all, and the other is definitely a queen free zone. I have sorted them as best I can and will unite them with my good hive and/or one of Kate's instead, before they lose any more strength. It is my hope that proper beekeepers will not start reading this blog, and that any paediatric hepatology bods with a passing interest in bees will not have sufficient experience to leave scathing comments on my pathetic mismanagement. I tried an on-line bee keeping forum but have so far been too overwhelmed (and busy) to go back.

This morning's ultrasound went well. I suppose we'll get a copy of the report at some point but as it was done by a different radiologist to Birmingham and with different equipment, baseline measurements etc. it won't give us much information until he has another and there is something to compare it to.

Mike and our one remaining chicken. The others died of old age (this blog isn't making me look like a fabulous practitioner of animal husbandry, is it?). She is lonely and because we feel sorry for her she's given a free run of the garden, but what she really wants to do is come in the house, and does so whenever the door is left open. She falls asleep on a chair at the kitchen table, or in the dogs' basket, or under the desk in my office, and sadly is not house trained.

Aunty :-)

2011-08-08T13:20:00.004+01:00

Huge congratulations to my sister and her boyfriend. Their first baby, a little boy, was born early on Saturday 6th August. I hope to be hotfooting it to Scotland to see them very soon.

We are getting through the holidays well, though they are going alarmingly quickly. The first week was spent in Wales in the sunshine (!), and not a day without something good to do - horse riding, whinberry picking, crab catching, sea swimming, beach combing, steam train riding, pub lunching, game playing, sheep feeding, bbq-ing, ferret petting... Since coming home we've been getting a lot done in the house and garden and taking the boys out and about, including swimming in the Thames, which was a beautiful thing to behold (especially as they had lifejackets on). I am still working, too.

Arthur's got an ultrasound at the local hospital tomorrow. His Oxford consultant thinks he should have one a year, and I am happy with this. They are not traumatic, don't require any fasting, and as I am under the distinct impression that Birmingham have mostly forgotten about him for the meantime* I think it's good for somebody else to be keeping a closer eye.

We're going down to unite two hives this evening and Arthur wants to come, so I'll try and get a bee suit picture!

Do you like the new visitor map? The massive dot in the South of England is me, looking at it to see if any other countries have been flagged up. Soon I'll obliterate most of western Europe, and will be one step closer to world domination.

* I don't mind about this. He's doing so well at the moment he doesn't need their specialist care, and I know they're there for us if he ever does.

Good bloods

2011-07-22T12:29:00.002+01:00

All bloods either normal or holding steady :-)

It's the start of the holidays today. Arthur's just getting better from a vomiting bug, Sylvan's just getting worse. The sun is shining, and when Mike gets home in time then I'm going to take Arthur down to the bees for the first time to take off some honey. He has his own suit now, it's incredibly cute.

We had bloods today [and/or] I'm not a beekeeper

2011-07-07T07:59:00.003+01:00

More of a bee-pest, an annoyance who meddles in their affairs, tries to influence what they're doing to my own ends, and then feels despairing when they go ahead and do whatever they want anyway. Which is mostly produce queens and fly away.

Arthur had a local hospital appointment two weeks ago and bloods today. We postponed them because there was no phlebotomist available, and I wasn't up for a have-a-go SHO. It went as well as can be, but Arthur was very distressed. I feel like we've taken a few steps back with bloods, due in part to the unexpectedly painful swine flu jabs he had the winter before last. Poor Arthur. Nothing to report from the appointment itself except that if all his vitamin levels come back okay then we can stop the supplements, which is just as well seeing as the K's nearly impossible to get any more.

Wedding pics

2011-06-30T20:34:00.013+01:00

Here are, finally, some wedding pics :-) It was a really beautiful, special day, which would not have been possible without the love, help, support and enormous fun-having capacity of so many fabulous friends and family. Thank you!

We were married in the morning at Oxford Registry Office, after which we took a bus (with plenty of bubbly!) to Headington Hill Park for photos. In the afternoon we held our reception at the beautiful Sandy Lane Farm, where we petted pigs and danced and sang* and sat round the bonfire**. We camped over as did many of our guests, and in the morning had a big barbeque breakfast. It was good, and it felt right, although I don't feel as though I really got to speak to anyone and would like to do the whole thing again and make it go in slow motion. I never did give my "Why" speech so may get it down here some time. In fact I completely failed to give any sort of a speech at all, but I think by that time I was speechless*** and so it would have been impossible.

So I give you - in no particular order, and not including anyone apart from us because I'm not entirely sure how people'd feel about me slapping them up on the internet - some photos ...

Sylvan didn't think the wedding was great, though I know for a fact he enjoyed some of it...

...like singing to an adoring crowd at the reception.

Our transport after the morning ceremony. This is a famous bus y'know, and has been in many a film. The other Routemaster bus we were going to have blew up a few weeks beforehand, and this was the absolutely perfect emergency replacement.

Newlyweds.

Arthur in the registry office.

Me.

Necklace by Becka of Becka's Insects

Posing in the park.

* Mostly Mike

** Mostly me

*** This is not a euphemism for legless

Reader, I married him

2011-06-13T23:24:00.002+01:00

(and I'm just waiting for the right photo to surface to illustrate the fact.)

Dear Wedding Guests

2011-05-25T13:45:00.003+01:00

I am really very sorry that I did not realise that Saturday is also the day of the UEFA Champions League Cup Final (Barcelona v Man U). Naturally I would have chosen a different date, had this been brought to my attention. We will provide a telly at the reception. I promise.

The Wedding at the End of the Universe

2011-05-22T20:11:00.002+01:00

When we picked a date for the wedding we agreed that it was a good one because springtime is a nice time, the start of half term allows for a honeymoon, and it's just before the tenth anniversary of our meeting. We didn't factor in that it is also the busiest time for Mike at school with coursework marking and exams, for the allotment with doing the prep that should've been done in the autumn and planting up, and now also for bees who like to swarm and throw casts in the face of their new and inexperienced keeper. It's called beekeeping because the tricky bit is, it seems, keeping them. Also, it has been astonishingly hot already this year and hasn't rained for weeks and weeks, so next weekend may end up being a premature autumn before the winter of a British summer.

Changes to the NHS

2011-05-09T10:55:00.001+01:00

Here is a rap about the proposed NHS reforms. Due to bad language this vid's not for kids.

I'm back...

2011-05-06T13:41:00.003+01:00

It's been a long break, I think I needed it (or perhaps just didn't have the time!).

Not much is new in the grand scheme of things -- Arthur's holding his own, but his ears are yellow when the sun shines through them. There's been a lot of sun though, maybe it's just a tan... Next appointment is slightly later than it oughter have been (each centre thought the other was seeing him), coming up at the end of June. Last appointment was okay, bili at 28 and he's now taking vit D and vit K, because his clotting was slightly longer than normal. I also found out that his last ultrasound, which was nearly a year ago now, wasn't all hunkydory even though the endoscopy showed his varices had receded, after which I felt dreadful and incompetent, as though I'd failed to keep up properly and had been unforgivably slack. The upshot of this was that I shouted at somebody else's kids in the street (bad! don't do this, esp. not if mother present and also other well-to-do parents in your kid's class, whoops) and then cried for an entire morning. And then you, I, one just has to bloody well get on with it. So that's what I've been doing, but I am starting to feel the anxiety of the next appointment looming. Bleurgh.

In other and much nicer news Mike and I are getting married in three weeks' time :-) Most friends have responded "Why?! Er... I mean Congratulations!", which is totally understandable. Dear reader, if you really would like to know why then ask and I'll tell you. Or maybe you're coming to the wedding, in which case you'll find out.

In other news: The allotment is dry as a bone. Sylvan can read. Both boys go to gymnastics and we recently took a break from Arthur's swimming as I was suffering swimming fatigue. Pathetic, yes, but there is something about the heat and intensity of a pool changing room that can only be endured weekly for so long. I think also that I'm going to make some changes to this blog, make it less liver disease based. I've got three hives of bees to write about now too, and small forays in to other worlds, of courses and of proper jobs.

Woah, there's the phone, I have a date - got to go!

Congratulations to us!

2010-06-26T18:50:00.005+01:00

On so many counts, we are very lucky. The endoscopy went brilliantly and really rather surprisingly. Both Mike and I were steeled for things to be either the same or worse, but... [drumroll]... Arthur now only has one small varix. Before he had an unspecified 'lots', and factors suggesting that they would get bigger, but whatever it is his body's doing to compensate for the portal hypertension is working and the blood is going to places that do not pose the same threat. This may be due in part to the spleno-renal shunt that showed up on his endoscopy two years ago. But whatever it's from - phew! We haven't seen the ultrasound report or lab test results, but Prof. Kelly was so positive and lovely (for t'was she that did the endoscopy) that I feel, for now, quite calm and reassured. The best news of all is that whilst his 6-monthly appointments and tests shall continue he won't have another endoscopy for a whopping 3 years unless results indicate otherwise. And we officially withdrew from the prophylactic banding study.

Yesterday was the 9 year anniversary of Mike and I meeting, which was pretty much the same as the start of our relationship. See post title :-)

Sylvan and Arthur have both recently had birthdays, too, and are now aged 4 and 6. Tomorrow is forecast to be the hottest day of the year so far so it's a good thing that the party we're having in the park starts early and we should be able to bagsy a picnic spot under trees. In the spirit of the World Cup Mike has offered to be blindfolded for the kids to play Beat the Goalie. Wish us/him luck...

I hate it.

2010-05-27T12:24:00.002+01:00

I hate it I hate it I hate it. The countdown to hospital, the attempted dressing up of something horrible as something fun, the phoning and chasing and checking that is necessary to ensure all is in order beforehand. Most of all I hate the great, vast uncertainty that is the sleeping demon of this disease.

How does time move so quickly?

2010-05-05T20:20:00.009+01:00

If it wasn't for the seconds ticking on the clock at the same speed as they always have I'd know for sure that time has speeded up, and continues to accelerate. Somehow, we are careering towards Sylvan's 4th birthday and Arthur's 6th. Somehow, we have reached a place where Arthur can ride a bike and is loving swimming lessons, where Sylvan can climb the front door like a pro to put it on the latch, and rig the outcome of Top Trumps to either win or extend the game as the fancy takes him. Oh, and where I leave it so long between posts that my comments get spammed in Chinese. And have turned 30. And Mike can sail and nearly kill himself in gales and monstrous waves between Lundy and Padstow. But I digress; these are other stories.

The boys are doing well. Arthur's early finish at school seems to be helping to keep fatigue at bay for the most part, but he still struggles a bit. I'm still not sure if it's really his troubles that cause this or if this just what it's like to be 5 and in school... either way, I'm glad of the reduced hours, and he's keeping up well. This past week he's been the Superstar of years 1&2, nominated by his teacher for being "kind, helpful, thoughtful and gentle." Yes, I cried. Sylvan is feisty and bright, beloved by his preschool teachers, and desperately trying to keep up with his big brother (to the extent of mastering basic maths and reading without any prompting or much help (yikes)). Through our time working on the allotment together he's developed a keen interest in planting different seeds, and checks every day to see what is growing in our natty little plastic greenhouses.

Alas I cannot write this entry without mention of the boys' stone fetishes, which started with Arthur at the Hermitage of Braid, Edinburgh, in February. Our house is beset with boxes and trays and pockets full of stones, of small cairns in corners and under furniture. I anticipate the death of the washing machie. Walks and outings grind to a halt over an interesting choice in gravel driveway, or because pockets are so weighted legs no longer function properly. It's almost as bad as when we had to check every single car for the number of exhaust pipes it possessed. Please do not visit unless you can endure a twenty minute showcase. Their communal stints on the toilet require their entire collections to be transported to the small upstairs loo (neither boy can manage them up and down the stairs any longer, they are too vast) and lengthy debates on the nature of their favourites are undertaken. I'll soon have to make like Andy Dufresne to smuggle excesses off our property. To top it all off, Arthur suffered his first lesson in the pain of rejection when he tried to lend his collection to the beloved Natural History Museum to put on display.

In other news, Arthur's booked in for an endoscopy and ultrasound in the first week of June. He was a little daunted when we first spoke about it recently, but his mood improved (and Sylvan's Very Serious Face disappeared) when it transpired we would have not one but two nights in a hotel (trains! taxis! lifts! biscuits! etc.) Our dithering over the necessity of his biannual endoscopies continues, yet I still come to the same conclusions as before.

I am grinding to a halt, but before I lose all momentum -- CONGRATULATIONS! to Hannah and Johannes on the birth of the beautiful Jonathan on the 22nd March. All of our love to you all x x x

As the Fox from Sven Nordqvist's The Fox Hunt on World Book Day, March

Top Trumps with Manus, April. Can you guess who won?

Also, I'd like to say that for once I am not responsible for Arthur's fringe.

See the size of my rucksack? This is post-lunch. It is all stones.

I'd like to post more pictures but seem to have failed to take many since before Christmas... :-/

It's all good

2010-01-12T20:28:00.002Z

The puppies thrived, are thriving - two already settling in to new homes and two off this coming weekend. Berlin was nothing but a great pleasure from start to finish, and the boys were genuinely happy in my absence (and gratifyingly pleased upon my return). For all I sneered at the bureaucracy of Arthur's school in their approach to meeting his needs, I must now eat my words, because they have been brilliant - supportive and understanding from start to finish, laying down a solid foundation of information and communication for future reference. Since the start of this term he leaves at 2pm every day instead of 3.05pm, and 1.30 on a Wednesday. Perfect. There is doubtless much I have left out (like, er, Christmas and New Year for example), but that'll suffice for now, and I'll follow up with pictures of puppies and snow in due course.

Puppies

2009-11-30T11:04:00.003Z

They've settled down now and are doing well. The first week was harder than I ever expected. Poor Maisie got dreadful mastitis and was very agitated with it, rushing around the house crying at all hours, only just managing to feed the pups with the pain, and needing a lot of comfort and reassurance. We got her to the vet asap and she was put on antibiotics and painkillers, and just in time too, for mastitis can progress quickly and one of her teats was starting to rupture with the pressure. After two days of injections and hot compresses she was much improved. Then, sadly, one of the pups died in the night. I tried to warm it but it slipped away. The following few days were sad and full of worry, but the remaining pups (4 girls and a boy; it was a boy who died - there had been two to start with after all) are growing like billy-o, with opened eyes and nearly walking. We will keep one but require good homes for the rest, so if you are interested please get in touch!

Good news

2009-11-14T15:41:00.006Z

Maisie had six beautiful puppies yesterday, 5 bitches and a dog as far as I can see. She's doing really well with them, and they're all a good size so it's no wonder she looked like this beforehand:

Aren't they just gorgeous?:

This is the only picture we've taken of them so far, being far too nervous of intruding to shove our flashes in at this early stage.

In the middle of all the panting and the pushing Arthur's Oxford consultant rang up, to say that he needs to go on Vit D drops as his Vit D blood levels are low. However there are none of the usual accompanying changes (e.g. increased AlkPhos, an increase in a certain hormone whose name passed me by, decreased calcium), so he is recommending it as a precautionary measure. Also, Arthur's enzyme results are much improved, albumin and clotting holding steady, and his bili is down from the by no means dreadful but not entirely comforting 28 to an ever-so-normal 15 :-)

I forgot the biggest news

2009-11-01T19:52:00.003Z

How could I? Another factor in the back-to-school lunacy was the fact that we were spending endless hours taking Maisie to visit the Boy Dog (Pip, his name is Pip), in the hope that she might be more obliging this time around. And she was, once the time was right, very obliging, only there seemed to be some *ahem* anatomical barriers. So we assumed it was still a no-go on the puppy front.

It was therefore with great delight that we confirmed (via ultrasound) a couple of weeks ago that Maisie is indeed expecting! An unspecified number of pups will hopefully arrive safe and sound some time between the 11th and 15th November. She is now unmistakeably pregnant, like - as my sister remarked - a little barrel with legs and a surprised expression. I have been reading up and am tomorrow planning on wincing my sorry self around Boots to acquire the recommended bits & bobs to help with whelping ♥

School and holidays

2009-10-31T15:14:00.007Z

The first term of school for Arthur and pre-school for Sylvan, after such a beautiful and idyllic summer, did not go well. We're now approaching the end of the first half term break, and that hasn't gone so well either...

Arthur started school first, all smart and shining in his uniform. The first few days went well, albeit tiring, before he fully realised just how long proper school days are and started to flag dreadfully. Flagging turned in to weeping, and hanging on to my legs-ing. Every morning was a messy process of disentanglement after which I would feel dreadful. Hours later he would return from school exhausted and whining by early evening. It probably didn't help that I had started taking the pill again around the same time as he started back and so was also a bit emotionally deranged, on several occasions found to be sobbing outside the school gates whilst kindly friends distracted poor Sylvan. And so it went on, with neither kindly nor firm approaches making the slightest difference.

Sylvan started next, 2½hrs a day, just as Arthur did two years ago. His calm before the storm managed to last 4 days, before all hell broke loose. And so it was, every day for what was probably only a few days but felt like some interminable period of doom and enforced-unnecessary abject misery. In the end I could take it no more and took an all-guns approach to making our mornings sunny again (Arthur would sit up in bed and say, before anything else, "Oh don't say it's school today again!", little face reddening and fattening and eyes brimming up). In the end it took about a week to solve for both of them, mostly thanks to stickers for just trying not to cry in the mornings resulting in a Friday meal at the beloved Red Star Noodle Bar.

For Arthur it has been trickiest. He is one of the youngest in his year, and not yet ready or much interested in learning to read or write, which the national curriculum is very interested in. He became quickly stuck in lunchtime games that involved nothing much except for manic chasing, as far as I could tell, and left him exhausted in the afternoons (so much so that he was opting out of PE to sit alone and look at books). His teacher is lovely and understanding, and he has good friends, but the sum total of concentrating and following orders and pell-mell break-times was just too much. As I result I decided to try and get him one afternoon off school a week, just to break it up a bit - this alongside one day of homedinners and alternating packed lunches with school dinners (he loves 'em). I have also encouraged him to seek out his other (more stationary) friends to play with if he doesn't want to run any more, and this has been quite successful.

Anyway - this is going on rather, sorry - eventually I asked the teacher about his having a regular afternoon off, hanging the request on the liver peg of fatigue. Teacher, apologetically (for she is in agreement), must ask Head. Head phones me, long chat. Head must ask School Nurse. Oh yes, of course. School Nurse phones me, long chat. School Nurse must ask Educational Social Worker. I must ask Consultants for a letter. School Nurse initiates a Team Around the Child meeting (must we, I wonder, sit in a circle with Arthur in the middle?). AARGH. Can't they just say yes? Consultants fortuantely can and do Just Say Yes, but the letter of Saying Yesness is floating around somewhere in the postal strike, along with Arthur's latest test results which I am desperate to see but trying to resist phoning up for. The rest is pending.

For the boys then, half term has been a welcome break. The plan was to go to Wales for a few days, then I would go to Berlin for 3 nights to visit Hannah. I have been looking forward to this enormously, but Wales had other plans, and instead I spent two days in the mine of bad memories that is Ysbyty Gwynedd, having my appendix taken out.

Summer summary

2009-10-03T21:44:00.005+01:00

We had a brilliant summer; it’s hard to know where to begin. Much of it was spent at home in Oxford which was great and went too quickly, but we also had forays to Wales and Scotland. Wales came first, kicking off with Roger Hughes’s 40th birthday extravaganza, before Mike went sailing for 10 days and the boys and I commenced our Grand Tour.

When Stan passed away Mike and his sister inherited his beloved 30ft Scampi, having promised to look after her and learn to sail. She’s needed a fair amount of work to get her sea sound again, and this was Mike’s first outing as a novice sailor, thanks to the support and expertise of my Uncle Graham, Aunty Linda and our friend Sean, all of whom are competent sailors already. They had a great albeit eventful and frankly alarming time (alarming by my standards anyway) and I rather fear all holidays to come shall include an element of Daddy sailing away in to the never-never…

While Mike was sailing me and the boys set off on a great visiting spree, taking in four sets of old and new friends in as many nights, all of whom are juggling kids and exciting projects. Our first night was spent with George and Annie in Llanidloes, where they are renovating a fantastic Georgian house and its grounds. From there we moved swiftly on to Thea, Laurie and Mossy where the boys introduced Mossy, only just turned one, to the joys of jumping off her sofa to rock 'n' roll music, and fell obsessively in love with small chicks. Then further south-west to Anna, Steve and Elliot's place, where Rheas appear and peer at you from the verdant Welsh scrub. They've since become a family of four, so congratulations to them on the birth of little Marcus! Final stop was with Caz, Mike and Grace, a gorgeous big-place fireside stop off in the woods before an epic six and a half hour journey home. I plan on returning to Coed Marros next weekend, all alone!, to take part in their volunteer weekend.

And that's not all, I am going to Berlin in a few weeks, also by myself. It's the miracle of growing kids, that I have 150% more nights away planned in the coming month that I have totalled in the past 5 years.

We also had a family holiday together up at Tentsmuir in Scotland. The last time we went was two years ago when we had a party for the boys. This time it was just us and a few visits from friends, and it was heavenly. Peace, the beach, food, fires, tree climbing, games, night 'safari' with the boys steering the car down forestry tracks, outdoor baths, wildlife galore... Tentsmuir is good for the soul.

Phew, I think I'm written out for now. Watch this space for some back-to-school ranting in the near future :-/

After good omens

2009-04-20T21:04:00.002+01:00

Good omens is the post I started writing about the blood-taking and I few things I noticed around it. It might get published some time, but for now --

We got Arthur's test results back over the phone at the end of last week. ALT and AST half their previous values (this is good). Platelets and clotting holding steady. Function (eg albumin, protein synthesis) normal. Bilirubin at 28, so steady on last June's value of 25 but a higher level of steady that prior to that.

There is not much to say about today. A hospital quiet in hot sunshine, a long wait, two tired looking Doctors with an inaccessible computer system (so no copies of results apart from ours, scribbled on the back on an envelope along with phone numbers and play centre opening times).

The itching was noted and discussed a bit, they decided not to treat it unless it worsens significantly (= disturbing sleep, damaging skin, upsetting him socially). We are in full agreement with this. Physical exam similar to before: spleen palpable to 5cm, liver's left lobe larger than the right, all unpleasantly hard to the touch. Palmar erythema (and you should see his feet, veins like mangrove roots branching down to his soles, but at least the haemorrhoid has receeded).

Hospital cafe lunch on the top floor, ride the lifts and the escalators, and escape back to the normal world, back to making a point of not watching him too closely while watching, at some level, constantly. This evening at bedtime I asked if he preferred it if Sylvan came to the hospital with us, and he looked relieved and agreed, so next time little brother can come, too, like he did for the bloods.

Not good omens, not bad omens, just the tick tock of time and the faintly alarming frequency with which appointments roll around - he is already nearly half way to his next endoscopy.

Tomorrow

2009-04-08T22:16:00.002+01:00

Bloods tomorrow, both boys in tow as Mike is in Wales working on his father Stan's yacht, which he promised Stan he would help to maintain.

I am quietly confident that all will go well as I have made it very clear that good behaviour* at the hospital = candy floss at the fair. Also, from tonight, no bottle of milk in the night (I know, I know! They're far too old, but I had a dummy until I was 8 so am overly empathetic on the subject. Anyway, it helps keep them hydrated, doesn't it?) = 1 fairground ride. As there are 3 nights between here and the fair on Saturday this should be enough to a) wean them and b) bankrupt me.

* Good behaviour does not mean not crying. If he wants to cry he then he can cry, and I will comfort him. Good behaviour applies to the rest of the trip, par example not running off and getting their little feet trapped in the lift door whilst simultaneously howling for jelly beans and announcing that I am no longer their friend, or similar.

More staff, please

2009-03-28T21:04:00.003Z

The NHS does not need managers. It needs more medical staff (from lab techs up to consultants), secretaries and support workers. For the cost of one manager often several of the former can be employed, and there's no point having a manager to tell people what to do if their workload is simply unmanagable - all the managers in the world couldn't fix that. Aargh!

Next outpatient appointment on the 20th April, bloods required pre-this so that they can be discussed during said appointment. So, I spent 20 minutes on hold* to the appointments dept, who gave me a number for phlebotomy. Called phlebotomy multiple times, phone never answered. Instead tried main switchboard who put me through to children's outpatients, which rang out then disconnected twice. Tried again later, and managed to make an appointment over the background sound of distraught screaming. Return from work the following day to message that appointment cancelled due to staff shortages that day. Call back on number given to change appointment but it's eternally engaged. Weekend arrives and so abandon all hope until Monday. All this, just for routine bloods.

* at 4p/min. Can I offset this against tax? do they claim gift aid?

What do you want to be when you grow up?

2009-03-22T20:56:00.002Z

"I want to be a woman!" says Sylvan. We'll see, son.

Arthur wants to be a doctor, and help people get better. Which people? Little children, he says. We will get him a doctor's kit for his 5th birthday, as he's been yearning after one for ages. When they had one out at school he would stay inside to play with it. Who with? I asked -- Nobody. Or whoever wants to play with it. His friend's mum is a paediatric consultant with a spare at-home stethoscope who drives a black Audi; Arthur is in eternal awe. I am in eternal awe because she does palliative care, and just typing that makes me cry.

In the meantime, Arthur would like to go to Boy Classes. Boy Classes? Boy Classes! Where you spin around really quickly and do pirouettes. And Anna B goes there. Ah - ballet classes. So I take a deep breath and explain that he might have to wear pink and there might not be any other boys, but he is undeterred - his pirouettes are so good that the teacher might say he is the winner! Ballet isn't about winning, I explain, it's about trying hard and doing well. Shrugs Arthur acceptingly: the teacher might say he has done very well! Will I get to dance like this? he asks, and tippy toes across our oversized bed, big enough to sleep up to four of a night.

Heavens. We'll go for a look and see if he liks it on Saturday. I had been thinking more along the lines of Capoeira, and his schoolmates do kickboxing and boxing and swimming, but...

Miscellany

2009-03-15T19:19:00.006Z

It was a no on the dog-love front. Oh well - we'll try her again and differently in August, and perhaps end up with a Christmas full of puppies. The quest for pups has had another rather different outcome, too. One of the mothers familiar to me from the school commented some time ago on how her family all loved Maisie (who is sometimes tied up outside if we are on our way elsewhere), and expressed interest in a puppy. A few days later I heard her talking in the reception to another mother, about one of her children. I wasn't intentionally listening in but certain words and phrases penetrated through the story I was reading to Sylvan: inpatient, IV-antibiotics, upper right quadrant pain, King's College Hospital... I asked her about it at a later date and it turns out it was indeed a cholangitis scare. Not BA, but another condition requiring a similar surgery, and performed by the same surgeon as Arthur's kasai. We have yet to discuss it further but I am sure we will. Have yet to tell her no puppy though :-(

Arthur's happy at school still, which is good. He divulges so little of what goes on to me that it is hard to confidently write an update that sounds like I actually know what the hell goes on there. However, he did recently recount a story that they read, reassuring me that environmental extremism is alive and kicking in the national curriculum:

It was a story about a rainforest, and a man came with machines to cut down all the trees! And all the animals might have died, but then it rained a lot and the rain washed away the man in his tractor. The animals were alright because they walked away from the rain and the man in the tractor couldn't cut down the trees anymore. I think he's dead.

Sylvan has been offered a morning place starting in September, too. When this begins I will be boy-less for 2.5hrs a day - what on earth shall I do with myself? (if you've seen our house you will know the answer!)

Last weekend we went and stayed with our friends Nick and Linzi in Reigate. Reigate, little boys' heaven - the North Downs with their steep slopes and rabbit holes, far reaching views over grand houses and horses in the warm warm sunshine, more aeroplanes than you can shake a stick at thanks to the proximity of Gatwick. And if that wasn't enough a level crossing in the middle of town right by the station and with cars and trucks and a squad of motorbikes and not one train but two and a footbridge to view it all from while drinking strawberry milkshake. Arthur has already expressed an interest in moving there but it's just a touch over budget at present. Thank you for a lovely weekend :-)

Arthur's next outpatient appointment has been moved back to the 20th April, so we will take him for bloods in a few weeks' time. He is definitely more itchy, and although it seems to be mild it is bothering him a bit. When I asked what it felt like he said "like hundreds of little mosquitoes all over my body", and not long ago he broke down and wept, howled that he didn't want to be itchy in school in case the other children called him Mr Itchy. Do they call you Mr Itchy now? No, no, but they might, they might see and they might think of it (at which point I nearly howled, too). He's brought this up again since, but not with the same degree of anxiety.

Phew, that's enough for tonight. I'll finish with a few photos and the excellent news that dearest Hannah, Arthur's godmother, is coming to visit us at the end of this month - can't wait!

The dog won't Do It

2009-03-11T11:07:00.002Z

Little Maisie is now three years old, and after much consideration we have decided to let her have a litter of puppies. I'm in two minds about this dog breeding business - enough dogs out there already needing homes, and probably enough dogs in the world already full stop. A bit like children, how many dogs should one have? Of course there is no easy answer to this. However, I'm not having any more kids (for now?) but really quite fancy babies around again, so puppies seem like a good option. ('And anyway!' screams my self-justifying inner voice, 'And anyway! you don't fly! you compost your waste! and have an allotment! and transport your kids by trike when the weather's okay!' etc., all of which is all well and good but has little to do with dogs and so is rather beside the point. I've recently noticed my inner voice is very keen on exclamation marks, whereas my rational self dislikes them).

Letting Maisie have a litter of puppies is not as straightforward as it sounds. For starters, dog-seasons are complicated things with a fairly precise but unpredictable window of opportunity. For seconds, she didn't much fancy the man that I chose for her - put her tail between her legs, sat on my foot and told him in no uncertain terms where he could go. After three introductions we gave up, and it soon became clear that she thought his father a far better catch as they played happily in the garden together. Still no, y'know, though. Pip, that's his name, is coming over to our house for a change this afternoon in the hope that she'll feel more, um, obliging in familiar surroundings. So please cross your fingers (or perhaps uncross?) that things go according to plan, 'cause I reckon she'd be a fantastic mummy, and anyway, I want puppies!

Welcome to 2009

2009-01-17T20:56:00.007Z

I've been taking a break from blogging. Dear reader, it may have been just as long as I usually leave between posts, but it was in fact a proper break. This was partially prompted by Arthur's last clinic letter, which stated in no uncertain terms that "Arthur is doing very well, but his mother needs to control her vaguely obsessive paranoia and worry". Of course it was put much more nicely than that, but I heard what the Dr. was saying. Hang on... I've just dug it out and read it again. Perhaps they weren't saying that. Either way I knew it was time to have a rest from all things liver, and anyway there was Christmas and all that shebang on the way to worry about instead.

Arthur's doing well. He had the option of starting full time at school from January but Mike and I decided against this. He found just a morning session pretty tiring anyway, and he's going to spend years and years in school - no need to extend it unnecessarily. Also, I wanted to still have the time to do stuff together - walks, swimming, baking, outings - that just can't be shoehorned in between the end of school at 3.15 and dinner on the table for half five. Instead he stays for lunch, until 12.45, which suits us all well. The whole school upset business settled down with no further trouble, and he has fallen in love with a dear little boy in his class. When he returned from the Christmas holidays he went straight to sit next to him and squished up as close as he could, holding hands.

Healthwise, generally, he's great, but on the smaller scale I am not so sure. He often complains of being tired and I have noticed him itching here and there, though not badly. In some places and lights his skin has a slightly yellow pallor and his eye whites are sometimes grubby looking, but when I look at and assess him every day it's hard to discern what it is I'm actually seeing. As ever only time and bloods will tell; his next appointment is in April.

Sylvan... Sylvan. Feisty little thing that he is, determined to do everything his brother can do without assistance, and also the things his brother can't. We put him in to nursery two mornings a week and he hated it. I had thought he'd love it - so strong and outgoing, and it was based in the same building as Arthur goes to school in so very familiar - but he didn't. He cried and stopped speaking, latched desperately on to one member of staff (a beautiful vivacious young Polish woman, he has good taste) and would become rigid with stress when we talked at home about him going there. We battered on through 4 or 5 weeks then took him out, it was too much like seeing a bright bold little daisy being flattened by the big muck coated wheel of an ox cart. He is fine, of course, but still occasionally wary of playgroups, and fond of checking that he is not going to return to that place.

Other news of note: we got 5 new chickens. The boys adore them and they are called Mike, Elly, Arthur, Sylvan, Benny and Jack (yes, I know, I can count too. And no I don't know which is which, apart from Arthur, who's quite blond). Arthur boy will spend up to and hour in their run, stroking them and picking them up, digging for worms, checking for eggs and imploring them to lay more.

I'll be interested to see what the coming year brings. Mike and I have been talking about some fairly big changes to our set-up but have yet to come to any conclusions. In the very short term it is my birthday next weekend (in to my latest of late twenties, 29) and was Mike's last weekend, and to celebrate we're having a night in a swanky country hotel in the New Forest. This is the first night we'll spend alone together since Arthur was born, and only the second night I'll ever have spent away from both the boys. I'm really really looking forward to it :-)

To finish - some good news. A little girl we know called Bethany received a donated liver yesterday and had a transplant that should save her life. Please join me in wishing Bethany a swift, uncomplicated recovery from the surgery and in thinking of the family who made the decision to say yes to organ donation. Love all round xxx

So...

2008-10-11T21:41:00.008+01:00

So, back when Arthur had his endoscopy, he of course had bloods done. It is standard to do a full set of labs pre-any-procedure, but because I knew he was doing so well, and because (I think) he had had them not so long before then, I did not follow up on what the results were. At hospital last Monday I found out that Arthur's results were up again, and that his bilirubin was 25. Okay, a bili of 25 is no great disaster, but this is higher than it has ever been post-kasai, bar when he had cholangitis and it hit the high 20s. The consultant from Birmingham, Dr McK (anonymous? I think not, oh well) assured me that he considers 25 to be within 'normal' range. I happen to know for a fact that their computer system considers <15 to be normal, but who am I to quibble with experts; quirky labs are not really considered a problem until they form a trend. Fortunately, I have an Excel spreadsheet that graphs all of Arthur's results, so any such trends are not likely to be missed by Mike or I. This is what parents and carers are for, paying attention to the minutiae: it's very important.

I am having trouble incorporating a link in to this post. To see an example of why it's very important please visit http://moreena.typepad.com, entry entitled Parenting in the PICU.

Overall the outcome of this latest appointment was good. Due to Dr McK's outreach clinic at our local hospital we do not have to return to Birmingham until such time as a repeat ultrasound or some such is scheduled. There were no bloods at this appointment, none until March in time for an April check-up. I wish that after these positive consultations I could come away feeling a bit cheerier, more able to let go of the anxieties that surround Arthur's health. I feel guilty through my own comparison to parents and children who go through much, much more than we ever have - who am I to worry about some theoretical medical complications, when some mothers fear day-to-day for the most basic welfare of their families, and themselves? There are so many links I could provide for this last section I don't know where to begin.

Sometimes it's very difficult to know what we can realistically do to make a difference to the lives of others, but really some actions are quite simple. If you can, give blood, and register as an organ donor. If you can afford to do more then contribute in some way - through time, finances or skills - to humanitarian work in countries less fortunate than ours.

* GGT helps to detect liver disease and bile duct injury.

Medical catch-up

2008-09-30T07:35:00.003+01:00

The fact that I have time to write this quickly before getting the boys ready for school today is a fine indicator of how well Arthur is doing. His exhausted, whingy phase a month or two ago (June/July time) fortunately passed, and the marks on our wall showed that he'd grown over an inch in two months. Following his endoscopy he's been very well, bar a recent dodgy tummy that has taken a long time to shake. The only slightly concerning event was a toilet bowl full of fresh blood at the end of August. Full is an exaggeration - there was a perfectly good poo at the bottom of it, surrounded by blood. This differs from the only other dodgy blood poo he's done, in which the poo itself had blood through it. However, there was no evidence of further bleeding, so we let it pass. We have an outpatient appointment on Monday at the local hospital, a joint clinic between our local consultant and one who visits from Birmingham. It would be good if his liver numbers would come down a bit, but other than that we are happy with his health at the moment.

The Strangler

2008-09-24T17:38:00.003+01:00

Me: So, Arthur, who did you play with at school today?

Arthur (chirpily): Well, I wanted to play with [the strangler], but I couldn't find him! My alarm bell was ring telling me there was an emergency, so I rushed off to get him to fix it, but he wasn't there! I chuffed all over the playground, but there was just no sign of him!

Me (aghast): But, but -- didn't he try to strangle you? Are you friends now?

Arthur (blithely): Oh yes! That only happened one time. We're friends now, and he is a really strong engine.

School's back...

2008-09-23T21:20:00.004+01:00

... and it's not so good :-( That is, not as good as it was last year - Arthur is decidedly more unsettled. He's lost his close friends through people leaving and re-jigged, larger groups, and as yet isn't reporting on any new ones. There is a boy in his class who is quite aggressive and has been spitting at Arthur and trying to wrestle him to the ground, and today another boy tried to strangle him when they were playing outside.
The latter incident was mentioned to me by Arthur's teacher when I picked him up, but he and I didn't speak about it properly 'til just before bed - it was a busy day with people around, and when I asked him at one point what had happed he just said in a little voice "But if I tell you now then everybody will hear me." When we did talk about it at bedtime he cried, and his little body shook, and I wanted to grab that horrible child* and/or his mother** and shout at them. But of course I didn't (and couldn't), so instead I cried a little bit and told him what a wonderful boy he is. Arthur is on the whole kind, gentle and considerate by nature, and it is very hard to see him being hurt both physically and emotionally by children who are not. I know this is part and parcel of school life, but its painful to watch. Fingers crossed they all settle down a bit more in the following weeks.

* of course all children behave like this some time, and I have been very tolerant/understanding of other people's children's violence*** at playgroups etc., but they are getting older now and, in my opinion, such behaviour is no longer excusable.
** I'm sure she's a perfectly good mother. However, I do hope that school told her of the incident so that she can talk to this boy about his actions.
*** ps Sylvan does a fine line in bites, pinches, hair pulling and headbutts :-/

Just pictures (read from the bottom up!)

2008-09-23T20:33:00.017+01:00

Crayfish! (Naughty American Signal crayfish).

Crayfishing in the Thames with my friend Kylea and her children.

Our neighbour Lucy brought her guinea pigs round to visit - thank you!

Breakfast at the campsite.

Much more wholesome and satisfying: most days were spent on rocky stretches of shore catching crabs and shrimp.

The most miserable collection of starfish I have ever seen. If we must come back to Earth after death, please please don't let me end up in a petting tank.

On the beach in France. Sylvan was very keen on playing "going to bed", and would keep up the pretence of sleep for several minutes at a time.

Evidence of our excellent summer weather.

... and Sylvan, too!

We had a lot of building work done in the house over the summer. Arthur modelling Uncle Graham's builder's kit...

The start of our holidays, petting pigs at our favourite destination, Cotswold Farm Park.

How things change

2008-08-26T21:28:00.004+01:00

When I was young, my friend Georgina's father gave a Valentine's card to her mother, his wife, that played You Are My Sunshine when it was opened. For some reason the memory stayed with me, and years later it was the tune that Arthur's mobile played over and over again as we tested and waited to reach his diagnosis.

Birmingham used to be the place that my first 'proper' boyfriend hailed from, and soon became for me an unknown city linked to that idiot. Years later it became the world outside the windows, and walks along the canals that always retreated back to Ward 8.

Recently, Hey, That's No Way to Say Goodbye was the track after the track after Arthur and Sylvan's beloved Marianne on Leonard Cohen's Best Of album, until Mike's mum sang it at Mike's dad's funeral.

We're off!

2008-07-28T22:47:00.002+01:00

Belated update for those who have not heard through other channels: the endoscopy went wonderfully well. It reminded me how much I hate hospitals and hate liver disease. We entered Arthur for the study, but contrary to all our expectations (and I think his Drs'), his varices have not grown in size since his last endoscopy two years ago! So, although his various test results indicate worsening portal hypertension, his body is accommodating it in ways that do not involve developing risky oesophageal varices. Phew.

Arthur is 4 years old now, and tomorrow we are going to France on a camping holiday. We're taking the ferry to Cherbourg, travelling south to spend one night in a B&B, then further south for 7 nights of camping. Please keep fingers crossed for no rain, not least because all of the door seals are falling off the 'new' car.

Things are pretty good with us at the moment. Sylvan is precocious and bossy, funny and bright, and still a first class climber. Arthur's sweet as ever except when tired and then dreadfully whingy. Unfortunately tired seems to happen quite often, in the past few weeks he's been struggling by mid-afternoon, and down right miserable by 7pm (having got up at 7am). If we let him sleep in the day then he won't go to bed 'til 10pm, which throws everything out of kilter, so other than trying to manage his exhaustion we don't really know what to do... except keep hoping it's a growth spurt that he'll grow out of!

Pictures upon our return. Think tent, swimming pool, woods, sunshine, goats, beaches, patisseries and boulangeries, and hopefully wine and reading in warm evenings after the boys have gone to sleep (yeah, yeah).

Off to Birmingham tomorrow

2008-06-16T21:37:00.002+01:00

Are we remotely ready? No. Is Arthur? Seems so. Ask him how old he as he replies "Free, but it is my birfday and I will be four soon. After we go to the hospital."

Our condition of unreadiness stems mostly from the fact that we have still not made a decision about the damn study. It's a difficult one to call: after several weeks of agonising over it the costs and benefits of opting in and out are still coming out roughly equal.

In favour of opting in:

Mainly, access to a treatment that will significantly reduce Arthur's chance of experiencing a bleed ("variceal bleeding is associated with a mortality rate of 5 – 9 percent in children with portal vein obstruction but there is a higher risk of death of those with cirrhosis" - I have no idea how relevant or accurate this statistic really is, but it doesn't half focus one's attention).
Assisting medical research, and so helping to develop and improve care for children in the future.

In favour of opting out:

Up to 5 endoscopies over the coming 2 years, each carrying a small risk of triggering a bleed, and each with the small risk associated with general anaesthetic. Not to mention the unpleasantness of extra bloods and in-patient stays.
Dear Parents, Your son has large varices and is at risk of a bleed. However, as he has been allocated to the control group of the study these varices will not be treated. Enjoy your holiday in rural France! And try not to fret too much. But keep the monitor on at nightime. Much love, the Liver Team.

However, we have managed to make a few decisions. One, we are going to drive our ugliest car in the world to Birmingham rather than take the train, because I'm feeling a bit pissed off with the increasing ticket costs, oft packed carriages and walking half the length of the train with two little ones to find a toilet that is actually in use. Two, Mike and Sylvan are going to come with us and stay in a hotel not too far away, that we got pleasingly cheaply at the last minute.

Have I mentioned before that the house that Edward's Trust run is being shut down and replaced by a RMH? It makes me very sad. Edward's Trust is a charity that was set up by parents memory of their son and is closely and uniquely associated with Birmingham Children's Hospital. Mike spent three weeks at Edward's House while Arthur was in-patient for his initial diagnosis and kasai, and I remember vividly the first time Arthur and I left the hospital, post-kasai, our first little venture out for an hour's 'normality'.

Sylvan is 2!

2008-06-12T22:33:00.003+01:00

Happy Birthday, little one!

Both Kate and myself were starting to look a bit deranged, so we packed up our new car (the birthday Rover died, so we bought another one... more on that another time, joy and shame all mingled together. No, it's not a 4x4!) and headed to Chipping Norton for a night in a hotel. Then on on Sylvan's birthday to a nearly deserted pre-end-of-term Cotswold Farm Park. I cannot recommend this place highly enough. We all had a wonderful Sylvan's birthday and came home considerably browner (me and Kate), blonder (boys) and more exhausted than ever (all four!)

Sylvan is a remarkable two. He is funny, headstrong, talkative and already out of nappies! What's more, he is incredibly beautiful - no parental prejudice, I assure you!

It was also Kate's 60th not so long ago, and we clubbed together and bought her a beekeeping starter kit, complete with bees. Perhaps I'll suggest that she starts a bee blog... As part of her birthday party various people gave performances and played music, and Arthur stood up in front of about 50 people and sang with a microphone, like one to the stage born. We had to drag him off!

Having just flicked through some recent photos to find one that does justice to Sylvan's beauty (and failed, of course!) I've realised just how much we've been up to in between blog entries. Leeds I've finally covered, but there's also a trip to Wales, going to the fun fair, a day in London with Alan at the Transport Museum, not to mention the general stuffing of everyday life... I don't think I'll try and cover these things now, but shall endeavour to write more regularly again. Thank you for continuing to check in on our family. Arthur is going to be in-patient for a couple of days next week, and I shall write about that shortly.

Leeds in the Springtime

2008-06-12T21:30:00.007+01:00

Way, way back at the end of March I took the boys up to Leeds to stay with my friend Sarah.
This was the first 'big' solo trip I've done with the boys, travelling about 5 hours door-to-door each way. It went really well, which is to say that I only cried once on the train on the way up and it wasn't because of them ;-)

We had a wonderful time. Sarah lives in a shared house with three other people, all of whom were welcoming and relaxed about having two such little ones invade. Much to Arthur's delight there was even a house rabbit called Bunny, who sweetly bought them little bags of chocolate bunnies to take home with them - there are still a few precious last ones knocking about in our special treats box...

On the day we arrived there was torrential rain, so we mostly camped out at Sarah's. The next day the boys woke early (to the detriment of my head, I had stayed up pretty late talking and drinking with Sarah and her flatmate Alex, an extremely lovely man). The other flatmate, Mark, was even worse off than I, sporting an as-yet untended to suspected broken foot and cracking hangover. Sylvan spotted him when he emerged from his room and, missing Mike, reached out his confused little arms and howled "Daddy! Daddy Daddy Daddy Daddy!" Poor Mark hobbled to the bathroom, only to find it occupied by a half-naked Arthur, who squeaked "Hello! Would you like to play a game?!"

The sun shone for the our second day, which we spent jogging after the boys at Tropical World and playing in Roundhay Park, where Arthur heard a woodpecker in the woods.

Sylvan emerging from the castle ruins in Roundhay Park. We have good parks nearby but nothing like this - it's brilliant!

Sunshine! We could do with a bit more of that. If I remember rightly, this was one of Sylvan's first days of not napping, despite having a bad cold.

Terrapins, dear? Tropical birds? Bushbabies? Giant koi carp? Sweeping views of lakes and fountains? Nope - just some stones and a drain, thanks.

Whoops, no pictures of Arthur. Oh well, I'm sure he'll get plenty of coverage in the near future, birthday time as it is now. I can't believe our trip to Leeds was so long ago already, or that this is my first 'proper' update since then! Sarah et al - thank you, again, for such a good weekend xxx

2008-05-09T07:14:00.002+01:00

Just a quick update on Arthur's latest outpatient appointment in Birmingham. I have been putting this off because there are much more fun updates that I haven't got round to writing yet, but I know some of you (you know who you are!) are keen to know how we got on.

He was an absolute star all day, so sweet and well behaved. It was obviously a pretty stressful day for him but he held it together and did ever so well. Even only cried a tiny bit having his bloods done!

The results of his ultrasound were okay but not fantastic. His portal hypertension seems to be worsening, but his body is 'compensating' for this (apparently a good thing), and he has grown a spleno-renal shunt and a number of new vein 'bypasses' around his liver. The spleen's a bit bigger at 10.3cm or thereabouts, and HARI up a bit to 0.9.

However, his varices seem to be markedly larger and more numerous (eek!). His consultant has recommended that he have another endoscopy in June and, if appropriate, is entered in to the prophylactic banding study. She feels that, if possible, treatment would be the best option for him. During the endoscopy they would also check his rectum because of the haemorrhoids, and treat them too if necessary (not with banding but sclerotherapy). If he is put in to the study group he would have up to 5 endoscopies in the coming year; if he in the control group then only one/two (one the following year). The idea of 5 overnight/two night stays, 5 general anaesthetics, makes me feel very sad, but then so does the thought of a bleed.

Blood test results were a little worse than last time, but not significantly worse (would still like the GGT to have stayed <300 though!), bili at 14 (still normal at <15 but the highest it's been since his cholangitis episodes back at the end of 2004). These results weren't really that much of a suprise, but they have given me a bit of a kick as to making sure his school are properly aware of what his risks are - I realised this was necessary after his teacher asked - or rather stated - "So this will be his last hospital appointment..." :-) I wish! Clearly hadn't been listening properly before so I woke her up with some risk-of-bleeds and likelihood-of-transplant chat :-/ Not a nice thing to do perhaps but occasionally necessary, especially when the child in question looks so damn well all the time. I have also written a much more comprehensive guide for them than they previously had on their records.

I haven't been posting much lately as there is a lot going on in our lives - too much! Some of this is my own fault for taking on more than I should've, and I am going to have to step out of a few projects I've become involved in as well as get better at not enthusiastically volunteering in the first place...

Arthur can draw!

2008-03-26T09:47:00.002Z

Yesterday, and all the days before it, Arthur couldn't do more than scribble, and showed no interest in drawing whatsoever. This morning he sat down after breakfast and drew a Hahoo. Blimey!

Sylvan speaks

2008-03-10T21:00:00.002Z

I think I've neglected to mention this delight to date, and so here - for my own Monday-night-at-home-alone entertainment rather than fulfilling your genuine interest - is a list of his words. In alphabetical order, of course.

Baby. Bag. Ball. Bike. Bite. Bye-bye. Da-da (thank you). Daddy. Daisy. Eye. Hand. Ma-moo (poo). Marmite. Me (yes). More. More daisy! Mummy. Oh dear! Other eye! Poo. Pss (please). Pull. Sky. Stuck. Wee-wee. Willy. Wipe. Ya-ya (Arthur).

Half rations

2008-03-08T21:05:00.003Z

We survived the illness onslaught, once again.

Mike and Arthur have gone away to North Wales together, to celebrate Mike's father Stan's birthday. This is the longest and furthest apart we have ever been, and I am missing both of them - so is Sylvan, he wept when we said goodbye at the station and has regularly asked for Daddy and Arthur (Ay-ya). Since they went we've spoken on the 'phone and it's clear that Arthur's having a wonderful time. Although it is good to have some special time alone with Sylvan the house feels rattly and empty with half of our family gone. Before Sylvan was born I couldn't imagine how I would manage with two children: now I wonder how I would cope with the intensity of only one.

I phoned Birmingham and Arthur's next appointment is not until April. I am getting cold feet over declining further endoscopies but am not quite sure why. Under the current treatment guidelines, if large(r) varices were discovered they would not be treated unless they ruptured, resulting in an internal bleed. The main purpose of the endoscopy would be as another point of reference in mapping the progression of his liver disease. At his age it still requires a general anaesthetic, no laughing matter, and he has already had four of these (biopsy, kasai, hernias, endoscopy). Ho hum. I have not concluded this deliberation, yet, but suspect (and rather hope) that I will come to the same point as before, and decide that an endoscopy is not necessary at this time. I don't want it to be necessary.

Spoke too soon

2008-02-26T20:44:00.004Z

Sylvan didn't get better, he got worse. Painfully, horribly, exhaustingly ill, with whatever nasty bug it was Mike had, only magnified in his tiny frame. Today he is getting better, starting to eat and chat again; we even made it to a playgroup for an hour this morning. This evening Arthur is ill. Please, please, no more vomiting, no more diarrhoea...

Shotover

2008-02-21T20:07:00.004Z

Some pictures from Shotover last Sunday, when Mike and I took the boys up to enjoy the return of the sun.

Arthur down a rabbit (fox?) hole. He squeaked and squealed and announced that something was tickling him, then produced a small frog from up his jumper.

Us hiding, Sylvan seeking.

Half term has, alas, not been quite the break we hoped for. Mike has had a horrible bout of gastroenteritis, and Sylvan's been holding his ears and howling. They are both getting better now, just in time for school to start again :-(

Skipping & skiving

2008-02-15T20:55:00.008Z

I got the job! Hurrah hurrah. It was the first one I had an interview for, and I am now PA/administrator for our local Green Party councillor (he's on the City & County councils). I'll be working 4hrs/day, 2 days/wk for the timebeing, and have just finished my first 'week'. The work is pretty varied, and has already ranged from mundane (opening post) to interesting (organising a talk by Mukti Mitchell; researching and writing a short history of Radley Lakes). Thank you so much for all the good luck sent my way :-)

Them boys are doing well. My wonderful family at Acorn are looking after them while I work, so they haven't really noticed my absence. Arthur's quite interested in my work though, especially the party part of Green Party. Is it a party? Can he come? Will there be cake? Not that sort of party, sorry dear. His keeness for school was flagging last week, so on Friday we skived off to Shotover country park in the morning, and spent a good few hours rolling and lolling around the in the sunshine (up until a couple of days ago we've had the most beautiful weather, freezing nights and bright blue warm days). This was before my interview in the afternoon, and certainly helped take my mind off it. The long weekend revived him and he returned to school with renewed enthusiasm this week. It's half-term now, so he will get a decent break, and Mike too.

Sylvan learning the finer points of mud kicking technique

Arthur levitating

My presence is required in the puddle

Quel horreur! The Pinkyponk is stuck in a tree.

January's gone,

2008-02-01T21:09:00.000Z

already.

New Year

To celebrate the coming of 2008, Mike went to a party round the corner with friends from football. Arthur slept during the day and so stayed up with me in the evening - at 1o.30pm he declared "Mummy, it's time to go to bed now!", and so we did. Vive l'excitement.

At the time, my clutch of resolutions looked something like this:

Be a kinder, more patient mother
Keep on top of our finances
Spend less time playing boggle online and more time keeping the house nice
Start and finish the work on the house (painting, floors, curtains, unblock drainsetc. etc.)
Get our allotment under control so we can grow at least some of the fruit & veg we eat
Get a job (well paid, part-time, in my field (ecology &/ agroforestry), close to home)
Eat better
Be more supportive of Mike's musical endeavours
Be a better friend to my friends, making more effort to keep in touch and visit

Okay, so 2, 4 and 8 are sort of working out so far - the drains are unblocked, and thanks to the extra dosh we borrowed on the mortgage (see later!) we are not currently in the red. The latter is no thanks to the Tax Credits people, who "misread" our annual review for last year and have now decided that we owe them £3k. Great. I've already started on 8 by giving Mike 3 evenings a week off after the boys are in bed, plus he already plays football twice a week and goes to a screenwriting course.

1 would be easier if only I could get some sleep. In the early throes of the month we all contracted the dreaded norovirus, and the boys spent much time vomiting in our bed. Then Sylvan's ear drum ruptured, and has been intermittently oozing puss ever since, between courses of antibiotics. Again, lots of time in Mummy & Daddy's bed, which we are now trying to undo - Arthur is particularly troublesome in this respect.

3 came under control when Hasbro/Mattel shut down the facebook boggle game. The house and house plants flourished, Maisie was well walked, the washing hung neatly instead of lumped on top of radiators. Alas, Bogglific has risen again as Prolific, so fulfilling resolution 3 is an ongoing struggle.

4 got off to a fine start, with the plunging out of years' worth of fat from our outside drain. Please note: not necessarily our fault, the quantity of fat indicates that it well predates our re-occupation of the house.

No, he didn't do a very good job

5, 7, ha ha ha

6 - I have an interview next Friday. The job's local, 10 hours a week, and definitely in my interest area. I don't want to jinx it by posting details, but please cross whatever you may have spare on Friday Feb 8th at 2pm. Thank you!

9: Have you noticed? Have I been in touch? Oh. Well, I will be soon. I promise. I might even come to visit (see Birthdays).

Birthdays

As both the boys are June babies, so Mike and I are both January babies, although he beat me by 15 days and an assortment of years.

Arthur (in apron, look closely) helped me to bake and decorate...

... a cake for Mike! Happy birthday, m'dear.

Mike definitely got one over on me in terms of gifts this year, colluding with my family (beasts!) to buy me a surprise car! A very fine Rover 214 (I think, or is it a 216?). This will not at all help resolution 10, which I failed to list above, which is to reduce our household carbon emissions, but I promise - to whomever may read this - that I will use it with careful thought and consideration. I especially love it now that I have discovered where it keeps second gear, and how to lock the boot. It's a pretty swanky looking car, yet still endearingly basic, coming as it does from the years just pre-electronification-of-everything. So, no electric windows or central locking, but a VERY LOUD alarm and faux-walnut panels. Pictures to follow.

Our house

We bought the house we've been living in since August 2005 just before Christmas. We bought it from Kate, my mother, and it is the house I grew up in. When I was younger I would have sneered/balked at the notion of coming full circle so soon after leaving (in '96, aged 16), but having done it it feels strangely right. Comfortingly, I am not the only one to have settled so close to home, many of my peers - both with and without children - have opted to stay in/return to the area.

Them boys, and approaching anxiety

Sylvan, at the back door

Perhaps through the cat flap?

Arthur enjoyed the coulis we made from allotment blackberries, frozen for midwinter use.

The boys are well on the whole. As mentioned, Sylvan's had a rough time with his ears, which I hope is finally coming to an end with a third type of antibiotic.

In March Arthur will go back to Birmingham, for an ultrasound and his first bloods in nine months. The ultrasound is giving me the hebe jeebies. As a procedure it's fine: no anaesthetic, should get through it okay with the support of Thomas and chocolate buttons. Arthur has had two ultrasounds to date, one at the time of his kasai, and one two years ago. It has often been stressed to us that with biliary atresia it is not necessarily individual results that matter, but the trend of results over time. To me, two lots of results do not make a trend, but three do. Given that his last ultrasound showed some deterioration from the first and highlighted new complications, I am wary of a further decline in form or function, and scared of what this 'trend' may indicate. I know it's ridiculous to fret about something so far in the future and so out of our control, but it has been playing on my mind. I don't want to wish Arthur's life away, but I do wish this appointment had come and gone, and that I could be in the future where I knew the results, good or bad. But where would I stop? How far in to the future would I go to check on his progress, how many small treasures might I accelerate past and miss to see the results of the next test? Are bad things easier to cope with if you know they're coming? Thankfully, zooming in to the future is not possible, so we shall just have to continue taking it one day at a time, and enjoying our time together as a family as it unravels.

Christmas

2008-01-12T22:01:00.001Z

This year we headed over to North Wales for Christmas, to spend a week with Mike's parents and nearby family. I was a little apprehensive of the trip, mostly concerned about how the boys would get on and how I would cope with a relatively long stint in somebody else's home (we haven't stayed there since two Christmasses ago, when Arthur was 1 and I was pregnant with Sylvan). I should not have worried: the boys had an absolutely fantastic time, as did I. Stan and Marjory live reasonably high up on a north-facing hillside, with sweeping views out over the hills, down to Caernarfon and right acrosse the Menai Straits to Anglesey. Beautiful. They were incredibly welcoming and hospitable, and keep dogs, horses and sheep, plus we had the extra task/joy of feeding the neighbour's pigs.

Arthur feeding a carrot to Chamonix, Aunty Caitlin's beautiful beast.

Sylvan loving Lulu, their Red Setter

On the first day we were there Marjory had booked places for us and Mike's brother Steve's family on the Welsh Highland Railway. Father Christmas was in attendance distributing gifts, as were (to my delight) cheerful sherry & mince pie wielding elves. It was an excellent start to the holiday.

The weather wasn't fantastic but at least wasn't cold, so we could play outside for quite a while before admitting soggy defeat. On Christmas day Arthur managed a good walk over the top of Penmaenmawr, alas Sylvan had a temperature that day so I had to stay home to drink Baileys and prepare veges for dinner while he slept... I am not usually a wimp but was a bit that day, though managed to redeem myself by riding in their new outdoor school before dinner, which was really enjoyable. It must've been about three years since the last time I got on a horse and I tried very hard to ride well and impress Mike's mum and sister, which I think I just about managed to :-/ Believe me, my legs paid for it for at least three days!

Mud? Of course. We love it.

My baby's more beautiful than yours. Sylvan at Pili Palas, which we visited on one of the even wetter days that followed Christmas.

All the excitement and adventure was quite tiring: Arthur on Christmas Day, post walk, recharging his batteries to stay up until 11pm playing with new toys (eek!)

I can say with confidence that the boys did not want to come home. Not snow, just shiny raindrops.

Since returning home we have been convincingly sick, taking it in turns to come down with the dreaded norovirus. A semblance of normality has now returned, and Mike and Arthur are both back at school. I know there are all sorts of anecdotes and stories that I could include here, but they will have to come with time. Watch this space for lengthy list of New Year's resolutions...

Familiar foes

2007-12-10T21:01:00.000Z

As Sylvan rose up on his banana flavoured wave of amoxycillin, so Arthur came a-crashing down. Wednesday, Thursday night he shook next to me and talked incessantly, long streams of consciousness flowing along the bed of his three year old logic. Friday, Saturday he cooled down and picked up, but on Sunday was easily weepy again.
This morning, Monday, he was hot again, and so did not return to school. At half past five he fell asleep on the floor, then at seven woke weeping - and wailed and clung and howled through dinner and a bath until I eventually put them both to bed. All the time I was wondering why - why the improvement then sudden downturn? what's going on? is he developing a biliary infection (cholangitis) as a result of being rundown with a virus? He has also had infections in both eyes - yet another thing that allegedly no longer require antibiotics - but he does not seem to be kicking them on his own. And then when I was brushing his teeth all the little bits of the puzzle slotted in to place: sore mouth, whitening tongue, stinking breath. Our poor biggest little one has a nasty case of oral thrush.

Plotting my escape

2007-12-02T20:35:00.000Z

Time is flying by, and no doubt readership dropping off with the ever-increasing gaps between posts. There just don't seem to be enough hours to shoehorn everything in, and we are already desperately clinging to the gossamer threads that connect us to distant friends and extrafamiliar interests. I can never figure out if this chronic lack of time means we are good or bad parents, especially when juxtaposed with the fairly horrific state of our house... However, I've noticed that people with beautiful houses tend to either work much harder than I see necessary, or have a discreetly concealed support system comprised of dishwasher, tumble drier, nanny/nursery place, and - crucially - an absolutely fabulous cleaner from [insert foreign clime]. Plus they seem to have mastered taking their shoes off at the front door and don't, generally, spend any time in nature or have dogs.

Both boys are, for the most part, well, although Sylvan is currently suffering a horrible winter 'flu. His little body is wracked by high fevers, he has infections in both ears, a bad cough, and a tummy that rumbles and heaves with each new assault of antibiotic/paracetamol/ibuprofen. Arthur is on fine form, rarely quiet or still, and very confident. I am proud of his ability to start and develop conversations* with the people we meet in the course of our days. He loves school, which is fantastic, and it squeezes my heart to see him playing with the friends he is making there.

* not necessarily in any logical direction, but he can at least keep them going, which is more than I can sometimes manage.

As for me, I've been finding things a bit odd lately. A couple of weeks ago I spent my first night ever away from the boys: Arthur has previously spent one night at my mum's house, and I have spent one night away in London with Sylvan, but I've not been without them overnight for three and a half years. After a particularly trying day I started to feel quite crazed, and so phoned wonderful Jenny, who is Sylvan's godmother, and announced that I was coming to stay, please, as soon as possible. That weekend she met me off the bus, took me out to a pub near Hammersmith Bridge, and then on to a fantastic and delicious meal at the Gate with her antipodean love, Matt. In the morning we ate sugared eggy bread and read the Sunday papers. It was a very special night*, but I've been feeling quite disgruntled since my return - bad tempered, easily upset, very emotional. That night away seems to have marked a shift in our family dynamic, towards a more even balance in our parenting. Arthur and Sylvan are getting older, and although I am indispensable in the grand scheme of things, I am no longer a necessary part of every bedtime.

* Apart from the noisy gits on their way home from Shoreditch's pubs and clubs, who kept me awake even more than the boys usually do. Only 27, and already so old.

I love my boys and Mike passionately and enormously, and I am not suggesting that they are not enough for me any more... yet at the same time I am, because I would very much like something that is mine. (The allotment is mine, but working there is not compatible with small children, and I barely scrape together the minutes to get down there once a month.) In an attempt to find this thing of mine I started to look for work, and found a job that I know I can do, and would be good at, and it is only three days a week during term time. The boys would be cared for by a combination of pre-school, a childminder and grandparents, a solution that I feel would not compromise them too much, but still, the guilt - the guilt! It chases me around the room. How could I even contemplate leaving the boys alone, to be cared for by somebody else? And what if something happened to them? I worry that if I take a job, no matter how part-time, I will never be as close to them again as I am now. But who knows, perhaps we will be closer, perhaps I will be kinder, more patient and more enthusiastically inventive when our time together is rationed.

Arthur's first school photo, November 2007

PS Please ignore my last post about applying for a job. I hadn't started it properly back then so it doesn't count in the grand emotional scheme of things. Anyway, my letter was rubbish and I didn't get an interview, so I'm counting it entirely as a dummy run.

Mummies don't die

2007-11-14T20:00:00.000Z

A: Mummy, are you going to die when you get bigger?
Me: Well, Arthur, everybody dies some day.
A: But Mummies don't die.
Me: I won't die for a very, very long time*.
A: Will you be in your office**, and you will be dead?

Aargh, how ought one respond to questions like this? Arthur caught me on the hop, and I don't want to lie to him about these things, but he is only three and a half :-/ I've a nasty feeling there will be a lot of repeating to do in the next few days.

* I hope
** aka dumping room with a computer in

All's well

2007-10-22T21:15:00.001+01:00

Birmingham agreed not to take any action re. the bloody (bloody) poo, and to wait and see what the next one would bring. So we did, and it was fine, but I can't help but worry a little because Arthur has been tired and grumpy by mid-afternoon for the past few days, even with the respite from school that half term has brought.

Tomorrow Arthur is going for a half-term day out with Tracy, to the location of his choice - London Paddington. They will catch a morning train, take morning tea under the fantastic arches, and then venture on to the underground to transport them to a lunch spot. It is Arthur's idea of heaven, and I am sorry not to be accompanying them, but he will enjoy it all the more for my absence.

Today Sylvan perfected the art of climbing on to the sideboard to reach the objects of his desire and/or attempt to turn the kettle on, and I had to confiscate entirely the little wooden chair he was using for his leg-up. Not to be deterred, he quickly turned his attentions to the kitchen table, expertly manouvering the big chairs to assist. I can't think where he gets this from.

July to October, and today

2007-10-14T20:13:00.000+01:00

I have not posted photos for a long time. Such negligence! My apologies. I hope the ones in this post will satisfy.

Way, way back in July we had another party up in Scotland. Below is a picture of Arthur that we took at our party in the same location when he was just turning 1 year old, but we didn't take any this year. Yes, we had the camera with us, it just didn't happen... It was a really beautiful, special few days for us. Friends came Scotland, England and Wales to camp with us by the sea, to talk and walk and play games, and to sit up late around the fire. Arthur had a wonderful time, despite a terribly upset tummy (particualrly unfunny with only a sand pit for a loo); Sylvan enjoyed parts but was still a little young I think.

Not long after our return from Scotland, Mike made a break for it and escaped to the south of France, alone, for 8 days and 7 nights. We would have missed him horribly had it not been for wonderful Hannah coming to stay from Germany. Hannah is Arthur's godmother, and a dear friend. The boys loved her, and despite taking it in turns to be ill and grumpy managed to charm her in return. She did make one tactical error in playing buses & drivers early on in her stay - a wheeled clothes rail was the bus, Arthur the driver, Hannah the onlooker/narrator - and if ever there was a pause in activities Arthur would plead with her to go upstairs and play it again, and again, and again.

We camped again in August, at the Cotswold Farm Park, under grey skies, our giant tent nearly taking off in the freezing in mid-summer gales.

After our lengthy, peaceful summer holidays it was difficult to release Mike back to school at the start of September. Arthur started pre-school on September 24th - 2.5hrs a day, Mon-Fri. He cried for the first two or three days when I left and when I reappeared, then one morning looked terribly serious and said "Mummy, I don't want to cry", and didn't :-) He really enjoys it now, and is making his own friends (and an adversary, who he runs away from, eek). Sylvan is clealy relishing the time we have alone together, and I have taken up going to the playgroups for younger children that we had temporarily abandoned, though he's not much impressed by group singing.

Autumn is here properly now, and I am applying for a job. It is only two days a week in school term time, but it feels like an enormous step. After over three years of solid childcare I do not feel very confident about returning to work, and am struggling to write my letter of application. Maybe I don't even want the job, but I've got to go back some time if we are to afford our ideal of Mike and I both working part time. Anyway, I'll give it a go, and see what happens.

Today, there was fresh blood in Arthur's poo. Not a lot, but mixed through, and enough to notice. It didn't worry me enough to do anything or call Birmingham about it, but it has left me a little disquieted. We have to watch Arthur every day, hoping that we won't see anything. No matter how under control I now have my anxiety for his health and his future, a low level of extra concern and supervision is necessary, stressful and tiring.

Alarming infant logic

2007-09-19T21:25:00.000+01:00

Courtesy of Arthur:

Got to shut the stairgate, or Sylvan will fall down the stairs! And it will be a great, big, enormous ow! And he will cry and cry! And he will go to sleep! And we can build a train track!*

*this is what we usually do during Sylvan's afternoon naps

The Lady is a Doctor (or) A Virus in the House

2007-09-19T20:25:00.000+01:00

Mid September '07: This post has now been an extremely long time in the writing. Finally attempting to get it out...
------------------------------------------
Late August '07: This post has been a long time in the writing. The details of Sarah's visit have been lost - it is too late now to recount the experience of taking the boys swimming and accidentally ending up in the swimming class for babies run by militant old ladies.

Sarah is many things, but most pertinently to this post she is a good friend and a doctor of the non-medical, scientific sort, specialising in research in to the Hepatitis C virus.
------------------------------------------
Mid June '07: I'm appalled that in my recent amnesia I have neglected to mention the visit to our home paid by Doctor Lady Sarah, or as Arthur called her, My Friend Sarah.

A: Is it My Friend Sarah?
Me: Yes, it is.
A: My Friend Sarah, would you like a cup of tea?

Ah, it is so gratifying when your children behave adorably and create a good impression on your friends! Especially when you know that favourable reports will be circulated amongst mutual friends and friends past who have not met them.

I've tried to write this lots of times and have just ended paddling around in niceties and platitudes, so I am going to axe those this time and plunge in... Sarah is my first stop for information on Hepatitis C, having completed a PhD on it, and now undertaking postgrad research. I have hep C. It does not bother me - my LFTs are fine, and physical exams and an ultrasound have shown no complications whatsoever. As far as I know I've had it all my life, but I only found out the first time I gave blood, aged 19.

Hep C can be a real bastard of a disease, leading to cirrhosis and its associated complications, occasionally liver cancer, and eventually liver failure. I am very lucky that it's never given me any trouble. This (Sarah tells me) concurs with latest research, which suggests that people who have chronic hep C from an early age are less likely to develop complications. It's generally worse for those who are older, male, and have problems with drug and/or alcohol abuse.

There is a less than 1% chance of hep C passing from mother to child. It is not known at what stage infection takes place, wheter the virus crosses the placenta, or if it transfers during the process of both (presumably both scenarios are possible). Arthur was screened for hep C antibodies during his initial diagnosis. Fortunately, the test came back negative - no hep C for him. I did not at the time appreciate how very fortunate this was. Sylvan was also screen, aged 3 months, and a low level of antibodies were found. It was suggested we wait and re-test aged 1 year, as the antibodies could have been remnants of my own.

After this, we had to effectively assume that Sylvan was hep C positive, not just for the sake of monitoring his own health, but because of the enormous difficulties hep C can cause in sufferers of other liver diseases - here, Arthur.

Hep C infection would undoubtedly hasten the demise of Arthur's liver. Treatment for hep C is... difficult. And it does not have an excellent success rate. Should a transplant become necessary due to liver failure, things get more complicated still. Transplant recepients are immunosuppressed to prevent rejection of the donated organ, but one of the essences of hep C treatment is immune system stimulation. Also, for reasons as yet unknown, hep C attacks donated livers with a greater speed and ferocity than native livers.

Emotionally, I found the 9 month wait before re-testing very difficult. Naturally, I did not want Sylvan to also face a life of potential medical complications. Also, to have two brothers, whom I dearly wish to be close through their childhood and in to adulthood, and have one of those brothers posing a threat to the welfare of the other -- be careful, don't touch, don't share -- it has felt like cruel wedge that could be driven between them, casting one as an unwilling aggressor and the other as victim.

Sylvan was screened again just after his first birthday, and everything came back negative; needless to say it was a great relief.

A bit of a surprise

2007-09-05T21:01:00.000+01:00

Arthur has been doing really well, in my opinion. Apart from routine outpatient appointments he has been hospital free since his endoscopy in April '06. He is growing and developing well, has had no jaundice, and no even minorly suspect bleeding. Liver enzymes are elevated but stable, and his bili levels and indicators of function (albumin, protein etc.) are all normal. Good, yes? I thought so too.

On Monday we had an outpatients appointment at our local hospital, in the joint clinic, with one of the consultants from Birmingham Children's Hospital. Said Dr. performed Arthur's endoscopy, and I was really quite shocked when, after examinationm, he said that Arthur's liver was "really very hard". He expressed surprise and concern about his haemorrhoid(s), apparently very rare in one so young (prior to this I had only ever spoken to registrars about them), and said he had "significant" palmar erythema. He said that of children with a successful kasai, Arthur was in the group that was "not doing so well" and needed more careful watching. He also said that he suspected, given the indicators, that his portal hypertension was probably now quite "severe", and would not be surprised if his varices were larger now than at the time of his endoscopy. And yet at the same time he was very agreeable to postponing his next endoscopy for a year, until early 2009.

Needless to say I left the consultation rather sobered.

At the same time, I do wonder how well founded his assertions are, as he hasn't seen Arthur before other than at the time of his endoscopy - over a year ago. Oh well: he is due an ultrasound in March '08, so I think I'll wait for the results of that before getting too alarmed - science over speculation and all that.

Place holder

2007-08-19T20:17:00.000+01:00

We haven't disappeared, and everything is well. I'm just having a bit of a break, and anticipate posting properly in about a week.

Sorry, sorry...

2007-07-13T19:51:00.000+01:00

... but you all know that no news is good news, I hope.

The trip to Birmingham went well. Arthur was obviously a bit stressed by going to the hospital but coped admirablt, and allowed the registrar who saw us to examine him without too much upset. This registrar was excellent - communicated well with both Arthur and myself, paid attention to what I had to say, and offered considered opinions. I noticed when we came in that he was reading the letter of complaint we sent about the last registrar we saw, perhaps this helped ;-) We never received a reply to our complaint, so I was also interested to see it had actually arrived and made it in to Arhtur's case notes.

Dr. didn't seem to like the sound of the haemorrhoid(s), but otherwise agreed that Arthur is doing well. The blood test results (he wept when they were taken: No, no! I don't like the bloods! Don't want the bloods!) came back pretty much the same as last time. Better would have been better, and worse worse, but the same is just fine - it means his liver is holding steady for now, and again despite the enzymes that indicate liver distress being elevated, all essential functions were normal.

Thursday looming

2007-07-02T21:09:00.000+01:00

If you want to know more of what we've been up to recently, have a look here ;-). There is no way on earth I could write as much as this (mystery) woman, so shall let her tell you our tales of visit and adventure!

The coming week is a busy one - tomorrow I am taking Sylvan back to the GP for 1 year testing, but more on that another time. There's a post under construction that covers it, but it's fairly emotionally heavy going to write so it's taking a while. (Lady Sarah, you star in this one!) I also have a driving lesson tomorrow :-/ but at least I've passed my theory test now - again - I've successfully passed it three times now! Must get on with the proper test.

On Wednesday I am taking the boys to London to see my dad, Alan, for the day. Alan is taking us on the Docklands Light Railway as Arthur's birthday present. So long as we can avoid commuters and terrorists I know we'll have a wonderful day.

On Thursday we're back to Birmingham, for an outpatient appointment. If this goes well then Arthur will be moving to yearly appointments in Birmingham, and seeing a local consultant (aka registrar, hmph) inbetween. I feel very positive about this visit because he has been and is clearly doing so well, but my hope and positivity still has an underbelly of worry: worry about blood test results, worry that they'll feel or see something with their probing eyes and fingers, something bad that I've overlooked... but for the first time I think my optimism outweighs my pessimism. I will of course post an update and results in due course.

Birthday Boy, aged 3

2007-07-02T20:42:00.000+01:00

Arthur's birthday already seems so long ago, and here he is, 3 years old. On Saturday I came over a bit teary when buying him age 3-4 underpants; I don't think I need to elaborate further on how special and lucky it is that he has made it thus far, reasonably unhindered.

On the day of his birthday we managed to pack in most of the things he adores: strawberries, raspberries and whipped cream for breakfast (oh dear I've already forgotten the morning's activity, whoops), followed by lunch at Acorn Guest House. In the afternoon we took two buses to Summertown and picnicked with Mike between the end of school and the start of parents' evening (bah!), then hot bussed it back to Acorn for dinner. Arthur refuses to sit with me on the bus these days, and if at all possible sits in one of the single seats at the very front, so tiny yet so confident and independent. On his birthday he turned to call questions to me, sitting behind with Sylvan in the pushchair, in his impossible high little boy's voice -- Mummy, would you like a cup of tea at Acorn Guest House? Ooh, yes please! Mummy, would you like a piece of toast? No, thank you, I've had enough to eat. Mummy, do you need to have another driving lesson? Yes. (I don't want to talk about it).

A week after his birthday we had a party for him at Acorn (big gardens, and luckily no rain!), which he thoroughly enjoyed, but I suspect (know) that he would have enjoyed it more without any of the other children there, just us and party food, and blowing up balloons, and hunting for foil wrapped chocolates in the bushes. He plays best when it's one on one, in a group he tends to stay on the fringes and observe. Having said that nearly all of the seven children his age there were friends of his whom he is fond of, and everybody was good natured and got on well together.

Thank you to all of you who took the trouble to send cards or gifts or birthday wishes in some form, it is wonderful to be reminded of how well he is loved by so many people.

Birthday Boy, aged 1

2007-06-15T20:38:00.000+01:00

After I wrote the last post my memory conveniently rebooted, and now I know that we've done a lot of visiting in the past few weeks. We spent a weekend in London seeing friends who are due to have a baby soon*, and Mike played a slot at an Amnesty International charity gig. As I did a large chunk of the travelling alone with the boys I couldn't take a pushchair (underground's a no-no with one of those things if you're alone), but Arthur was fabulous, doing exactly what I asked him to in a state of constant delight and enjoyment. To him London means three things: trains, buses and the underground, and he loves them all.

* timeously reminding me just what a fantastic and dreadful slog pregnancy is.

Last Saturday was, of course, Sylvan's birthday. One! Beautiful boy. In the morning we hired a pedalo for an hour and pratted about on the rivers Cherwell and Thames, fulfilling Arthur's latest ten stickers reward. (We've scaled back a bit since and have reverted to visiting guinea pigs.)

Afterwards we went for a cheap and cheerful lunch at our local pub, which is a friendly (albeit debatably immoral) place with a garden full of toys and games for little ones, and to finish the day off in style we spent the night in my mother's garden shed. The plan had been to have a b&b room so as to escape an invasion of lodger's friends at our house, but due to some crafty double-booking errors there was no room at the inn, so we settled in a bed on the shed floor (it's a four star shed, replete with rug, chair and electricity!) I am a beastie loving individual and could not bring myself to suck the many spiders out of their little funnels with the hoover when I was getting it ready, but regretted my softness in the small hours as dimly remember statistics about the number of spiders one accidentally swallows in the course of a year spliced with my dreams.

Mike has built a wonderful sandpit. Arthur loves it. Sylvan wants to eat it. Our house has a distinctly gritty edge to it on days when the weather is fine.

I think I've neglected to mention in previous posts that Arthur's been offered, and we have accepted, a morning pre-school place just around the corner from us. Several of his friends will be going at the same time, and most of the children make the move across the playground to the primary school when they turn five. It's in an attractive red brick Victorian building with a large, varied outdoor play area, and is ridiculously close to our house :-) September's not far away!

You've been where?

2007-06-03T20:12:00.000+01:00

It's been a long time since my last post.

I have no idea what we've been up to, but am hoping that some of the past few weeks will return to me in the course of writing this.

Sylvan is going to turn one in 6 days' time. One! The year since he was born has gone so quickly. Sylvan turning one is followed 12 days later by Arthur turning three. Three! Ooh, they grow so quickly, it's true. Sylvan is now very mobile (stairs no object), though still not walking. He has on occasion seemed to say "Daddy!" and can definitely, when playing boo, say "Boo!". He has great control of his boldness and a fine sense of humour. Arthur is also doing well. At the moment he seems to be testing our honesty, checking that what we say matches with what he understands to be true. For example, in a cafe --
A (for the umpteenth time): Is it mummy's toilet?
Me (absent mindedly): Yes.
A (mock shock): No! No! It's the cafe's toilet! Not Mummy's toilet!
Plus I am struggling a bit with definitions (is that the right term?) for him. Only the red strawberries are ready to eat. Yes, that one is red, but it's not red enough. And I can see him thinking: so when is a strawberry red enough? And why haven't they reddened in the time it takes for me to walk to the shed and back? Language is a trickly business, it can be very confusing for all involved.

Not long ago the boys and I went to visit Sharon and Hannah in Coventry, with thanks to Sharon for her hospitality and a good day had by all. It is unlikely that our paths would have crossed had it not been for the shared experience of biliary atresia in our children, but most clouds have silver linings and I have met some incredibly strong people as a result of Arthur's troubles. I have been asked to help out with creating a glossary of medical terms over at Liver Families but have so far not managed to get even one done :-( Next week! It can do battle with my tax returns for attention, and probably win.

I'm too tired. It's time for bed. Hopefully there will be more soon.

Arthur's medical history

2007-05-14T21:35:00.000+01:00

What follows is a brief summary of Arthur's medical history. To keep it short I have omitted the details of our various hospital appointments and the day to day management of his condition. I shall update it as necessary.

Born June 21st, 2004

Arthur, aged 1 day, sleeping with Mike

Referred to GP by midwife aged 3 weeks due to persistent jaundice, then referred to local hospital. Seen by consultant at local hospital aged 5.5 weeks and immediately put on waiting list for an emergency bed at Birmingham Children's Hospital (BCH).

Admitted to BCH aged 6 weeks, inpatient for 2 weeks undergoing extensive testing. As all tests indicated biliary atresia, he was opened up and, upon visual confirmation of this diagnosis, a Kasai hepatoportoenterostomy was performed. Arthur was then aged 8 wks & 1 day.

Discharged aged 9 weeks on a 15 dose/day drug regime. Readmitted aged 10 weeks for bilateral inguinal hernia repair.

Admitted end of October ' 04 (aged 4 months) to Ysbyty Gwynedd for cholangitis, a bacterial infection of the biliary tree. Treated as an inpatient for 10 days with IV antibiotics.

Admitted to YG Christmas Day '04 for cholangitis. Treated as inpatient for 15 days with IV antibiotics. During this time we found that Arthur was prone to febrile convulsions. Despite a number of scares resulting in overnight stays or 2-3 days of hospitalisation this was the last case of cholangitis to date (May '07).

A follow up ultrasound in March 2006 confirmed our suspicions of portal hypertension, and identified a minor worsening of his liver's condition and some gastro-oesophageal varices. These were confirmed by endoscopy in April '06.

Haemorrhoids, another symptom of portal hypertension, were first noticed in February '07.

Arthur is doing well at present. His liver enzymes, which climbed steadily from March '05, took a slight downturn in July '06 and have since, although elevated, held level. He is not currently on any medications.

Reprimand, reward, retreat

2007-05-12T20:22:00.000+01:00

Reprimand. Arthur has started doing two minutes on the stairs for bad behaviour. He doesn't have have to do it often because the first two minutes on the stairs resulted in such emotional trauma for the poor boy (mostly from the shock that mummy not only said it but meant it) that he regards it as great punishment indeed, and heeds my warnings.

Reward. Stairs for Two Minutes, as Arthur calls it, is a commonly used technique that I learned from the telly, along with our other recently employed tactic of a reward system for good teeth brushing. Get five stickers, go to see next door's guinea pigs. Get five stickers, go and see the fish and have cake in the Magic Cafe. This approach has been a huge success, and Arthur has gone from evasion every morning (when he brushes his teeth himself) and weeping every evening (when we do it) to being absolutely fine about the whole business. I have even caught him brushing his teeth of his own accord, and then awarding himself extra stickers :-) In an effort to stretch the whole system a little the next reward has been bumped up: get ten stickers, get to sit on a horse. And feed it carrots.

Retreat. Bedtime is changing. Again. The last time I tried to alter Arthur's bedtime routine (me squashed up in bed with him while he stayed awake as long as possible just incase I left) I attempted the gradual retreat method (yes, I also got this one from the telly). The idea is simple: every night you sit a little further away from the bed, until eventually you are downstairs enjoying a well earned mojito while they fall asleep. No helpless sobbing, no parental agony - I don't believe in leaving children to cry. The last time I attempted this I got as far as lying on the floor by his bed, holding his hand. This time I am being more ruthless, and tonight made it out the bedroom door and in to the hall. Most of the time Arthur's fine with it, and has even put out the cushion I've been sitting on and instructed me to sit on it. A few times he's been too tired to cope, and I have let him go to sleep in the double bed with Sylvan, but all in all it's going well.

Not banking on the holidays

2007-05-07T21:09:00.000+01:00

We've had a lovely bank holiday weekend, but disastrous in terms of sleep, so here are some pictures to tide over 'til the next post.

Jenny (Sylvan's godmother) and Arthur in the fountain at Canary Wharf, the site of Mike's exit from the marathon. We would have been totally scuppered without Jenny's help and humour.

Hm, these aren't in order. Oh well! Herere's Sylvan on a swing at Pecorama, when we went on holiday.

Pecorama again: the boys & I on the narrow gauge steam railway. This is really a photo to show how beautiful Arthur is.

Sylvan, asleep for once.

Happy Beltane!

2007-04-30T22:19:00.001+01:00

Wishing you all a green, peaceful and sunny Beltane.

This year summer has already arrived with a vengance. I spent today feeling quite alarmed by the weather and wishing it would rain, but the forecast says solid sun for the next five days. It's time to press on with arranging the nominal greening of our home - a woodburner for heating in winter, solar heating for the water, dark summer curtains to keep out the heat and heavy winter ones to keep in the warm. Mike has planted potatoes and tomatoes in the garden, and the allotment's potential fruit production is improving. Soon we shall replace our chickens (third time lucky), and I will continue to use a 30 C short wash as the main cycle. If I find the strength then Sylvan shall go in to washable nappies, like Arthur was before I was crippled by lack of time and a giant belly. Washing nappies at least passes the time in hospital, and at most gives one a bit of purpose and control, although I shall ever rue my decision to keep him in washables when his wee was radioactive, which lead to the accidenctal incineration of a very nice new and expensive waterproof wrap :-(

For the first time in a while it feels as though we are just getting on with some normal time at home together, and Mike is getting to spend time alone with the boys (repressed: yippee!). Our sports and social schedule has not left much time spare recently.

Arthur is... okay. Hopefully he's growing, but he's been very tired recently, and quite clingy. It's so hard to look at things objectively when you're with him every day, but he is definitely more tired than usual, and I would venture that the veins on his hands, feet and tummy are more prominent. He has a couple of spider veins on his cheeks. Were they there before? He's pooing more frequently too, though this may be as a result of being out of nappies, and it's difficult to ascertain volume down the loo. Birmingham have not requested bloods before his next outpatient appointment there and Mike and I have agreed not to request them; after all, what would they do? And I fear we are being silly. Maybe it's time to let go of the worrying and just get on with the living, but it's difficult to let go of it, just in case. I don't think we will ever be able to leave his care entirely up to the Drs, and I think to rely upon them entirely would be a mistake. I learned in hospital to watch and check and record everything that goes on, and if that sounds ridiculous then I can only assume you have never had to advocate for a wordless child. However, it is difficult to wind down the level with which we monitor. I assume and hope it happens gradually over time. Actually I know it does, because it has already decreased from the early days, I just don't know what the baseline of our monitoring should be.

It's time for bed. Bed - in our own bedroom! Our own of course being mine and Mike's room, with Sylvan and Arthur now sleeping in what used to be the guest bedroom. Sylvan sleeps in a double bed and I am usually in there with him from about 0100 onwards, but it's very good to have moved them in to their own defined space. About half of the time Arthur staggers over to join Sylvan and I at about 0400, but the rest of the time sleep through 'til they get up (from 0530 onwards).

Good night :-)

And the grand total is...

2007-04-30T21:16:00.000+01:00

-- drumroll --

£2,293 collected to date
£160 outstanding *
£512 reclaimed tax *

£2,965!

* these numbers are a bit wobbly - depends on whether a couple of people sponsored per mile or just for taking part, and whether or not all of the gift aid is reclaimed.

I think that our next fundraising event will be in aid of Edward's Trust, without whom we would have been scuppered during Arthur's time at Birmingham. Also, I think we'll go for an event for people to partake in (a ceilidh, or a meal, or bingo or some such) rather than just straight sponsorship.

Bingo?

The London Marathon

2007-04-24T21:08:00.000+01:00

I'll start with the difficult bit, with this post's punchline: Mike did not complete the marathon.

There is, of course, a story to go with this. If for your sponsorship you wanted physical struggles, emotional turmoil and logistical farce then you got it. If like me you wanted a simple happy ending... no such luck. But, but! the upshot of all of this (see below) is simple - Mike worked really hard and did absolutely fantastically, so let me proclaim a loud and public

WELL DONE!

and trust that you will all echo it.

It is late and I am very tired, so what follows is a brief resume of Mike's part of story, as told to and witnessed by me.

The morning of the race went well, with Mike and his sister Caitlin making their way from my father's flat in Brixton to the start. Jenny, the boys and myself set of somewhat later from Jenny's house and headed for Canary Wharf, to see if we could spot them. The weather was hot and quite humid, and the beating sun entirely unsuitable for a marathon. At about 6 miles Mike was running well, but could feel a blister developing on his foot. At 14 miles he started to flag, and felt his breathing deepen. He told himself (bless him) that this was just a 'wall', and that he would find us at Canary Wharf and continue on the strength of a kiss and a hug. A few miles later he had added a minute's rest to the kiss and the hug, and a few minutes after that had promised himself he could walk from there if necessary, and listen to some music for the first time. These 5 miles were the hardest endurance that Mike has ever experienced.

Jenny and I watched for Mike for quite a long time, and were about to give up, thinking we must've missed him, or that had passed before we arrived. We were about to give up and move on when I spotted Mike in the throng of runners, walking on the far side of the road from us. I shouted and shouted to him and eventually he heard me, and fairly staggered over, looking like hell. I was very surprised, and quite shocked. By this time Mike had been walking for about five minutes, and was getting in a very bad way. His peripheral vision was blurred and he said it was as though a veil had come down over his eyes, plus his hearing was going - sounds were becoming distant and hollow, as though in a swimming pool. Jenny, crack neuroscientist that she is, says that these are signs of the central nervous system shutting down :-/

As we were separated by a fence and a hedge, Mike carried on. I went in to a bit of a panic and promptly legged it to meet him, carrying Sylvan, leaving Jenny to competently temper Arthur's howls at our sudden abandoment. I met with Mike on the next corner, were the St. John's Ambulance volunteers were removing his shoes and rubbing baby oil in to his feet. Having ascertained that he wasn't about to disappear I returned to locate Jenny and Arthur, then we waited for Mike further down the course, in the shade of the DLR bridge.

Mike arrived a few minutes later on the shoulders of the St. John's, who helped him on to the pavement with us. He spent the next - I don't know - 45 minutes lying on the pavement in a torment of pain as his feet cramped terribly. They were too painful to touch or to stand, and it was clear there was no question of him continuing. We eventually conceded that we'd need some help to get out of there and asked the St. John's for a wheelchair and assistance up to the DLR platform. Poor Mike had already been a public spectacle for some time, and now had to endure the (rather amusing) indignity of being wheeled about with his arms strapped down like a man unhinged, wearing my pink, fluffy, size 10 jacket.

Our aim at this point was to get off the Isle of Dogs and find a taxi to take us to the CLDF reception, where we could meet with our friends and give Mike a decent rest. Finding the bloody train platform through a maze of lifts and an elite shopping mall's back alleys was a total performance - fortunately we put Mike in the last working run of one lift, or it would have been a long day indeed. We eventually made it to the Tower of London, and enlisted the help of the Police to find a taxi, which took another half hour at least. I eventually secured one with an excellent sprint and a fair bit of begging. Mike was still unable to walk without assistance at this point, but managed a stiff legged stagger in to the hotel :-)

It was a relief to get to the reception and have a few cups of tea. Mike the fallen hero got to rest and tell his story many times, and Arthur passed out in his pushchair (he had been up since 0530). Thank you so much to our friends who came along to see us there, it really helped buoy us up for the journey home, which fortunately passed without event.

Mike's still hobbling, and his right foot is still very swollen - turgid and painful along the arch, over the top, and down the outside. What went wrong? He did, after all, do several training runs longer than the 19 miles he covered on the day. I suppose it could have been any or all of the weather, his shoes, the pace he set himself, his recent illness (was only back in school the Thursday before), a history of too-tight ski boots...

He's muttering about trying again next year; I'm begging him not to.

I'll do a fundraising update soon. In the meantime, thank you again for all the messages of love and support that we've received since Sunday.

The day the telly came

2007-04-18T20:44:00.000+01:00

We're going to be on the telly, heaven preserve us. Archives preserve us. I don't want to be on the telly, not one little bit, but it's good publicity for CLDF and may generate more fundraising before Sunday. Thames Valley Tonight will be airing a news item about us and the marathon. There ought to be some sweet footage of Arthur and I reading together at the outside table, and of Mike and Arthur playing together on the slide - Arthur topless, because he stripped off and refused to dress again, and mostly going backwards down the slide instead of forwards.

The only other time in my life that I've got trapped in the box was during Mike's appearance on First Past the Post (the search for Wales' next politician - he came second), and very unflattering it was too. Anyway, it is of course not about me or how I look, so none of that should matter. The presenter initally wanted to film us having dinner together, but I had to say no to that one. Being on telly is bad enough, but there's absolutely no way that I'd voluntarily be filmed eating while attempting to temper Sylvan's enthusiastic fist-to-mouth technique and coax peas down Arthur one at a time.

The camera man was very tall and handsome, and took a great shine to our garden shed, which he made sure to get in the background of the individual interviews. Look out for it if you're in the area. I reluctantly admit that I selfishly hope not too many people round here spot the piece, because I've been imagining them (the great General Public) thinking things like Oh look it's that woman, I saw her shouting at her child in Tescos last week. Her poor, beautiful, sick child! What a monster!

Marathon training, part 5

2007-04-16T21:21:00.000+01:00

This time I'm afraid that the news is there is no training. Mike's ill, and spent yesterday in bed with a fever. He's a bit better today, but nowhere near running standard. Please keep your fingers and anything else to care to cross crossed that he improves, and soon!

Trains and stones

2007-04-16T20:25:00.000+01:00

Our holiday was, thank heavens, a great success*. The travelling went well, with the boys sleeping for the majority of the drive down and back.

On the afternoon we arrived we visited Pecorama, to see the little trains. It is a paradise for families and model train enthusiasts alike - we shall definitely be returning! Arthur was enamoured by everything on offer: brilliant model railways where you could push buttons to make the trains go, a ride on the mini steam train (I liked that too!), and the beautiful gardens with great play areas. If I can figure out how to do it then I'll post a video of Sylvan on a see-saw.

The hostel was also lovely, but I think hostelling for only one night is a mistake, too much extra work and planning necessary for such a short stay (we had, for example, neglected to take any teabags, which definitely contributed to *). Arthur played football with some kind and patient older boys, and identified and chased after pheasants while Sylvan roamed the floors and garden with great intent. Mike even managed to get in a 6 mile run in the morning, covering a short stretch of the cliffy South West Coastal Path.

We had not planned it, but ended up spending Friday morning at the Elisabeth Svendson Trust Donkey Sanctuary in Sidmouth. Annie, the friend who we visited in Edinburgh to say good bye to, died just over a week ago. She was a passionate supporter of animal rights and welfare, and had adopted Rosie, a donkey from the EST in Leeds, for Arthur, so it seemed fitting to spend some time there. I spent a lot of the morning feeling a bit weepy, but in an okay way. I did not attend Annie's funeral and this felt like an alternative way to pay my respects.

Lunch and afternoon we spent under a cloudy and occasionally rainy sky on a beach full of stones, where we joined many others in the simple yet pleasing pastime of throwing stones in to the sea. Mike unjammed the pay & display machine in the car park, and gor £6.70 for his efforts, which paid for a very nice picnic. On the way home we got lost searching for dinner in the strange MoD lands that occupy Salisbury Plain and its surroundings, before eventually stumbling upon the Antrobus Arms Hotel, where I rather fancy spending our next night away ;-) Posh eating places usually send me in to a flat spin of panic, trying to contain the children for the benefit of other diners while attempting not to upend my dinner or drink too much wine. This time we were the only diners in the restaurant, the staff were lovely, and there were gardens to let the boys loose in beforehand and afterwards.

*provided you leave out the argument we had after breakfast, and Arthur's crazed and inconsolable misery in the middle of the night

Potty training

2007-04-08T20:10:00.000+01:00

Arthur's been out of nappies for three days now. I think this could have happened quite a long time ago, but in the cold weather it would have been a lot more difficult, especially given the amount of time we spent outside with him layered up and in waterproof overalls. It's going well, though there are a few social nuances that he has yet to pick up on. This afternoon, for example:

Arthur: Need to do a poo!
Elly: Great! Come on, let's go to the toilet.
A (wails): Want to poo on the grass, like Lily! (Kate & Tracy's dog)

I compromised - he could poo on the grass, but in a potty. Fine. Compromise and distraction are probably my most used parenting skills, and he responds well to both. Afterwards he turned round and examined it carefully.

A: Is it a caterpillar? Looks like a caterpillar, but it's not a caterpillar!

Well, at least we're straight on that one. Then, just before bedtime -

E: Arthur? What are you doing?
A: Gonna do a poo, in the pond!

I could hear the neighbours sniggering over the wall.

Marathon training, part 4

2007-04-07T19:50:00.000+01:00

Not so much a miles run update as other events and concerns!

The Oxford Mail ran an article on Mike's marathon attempt, you can read it here if you like, and marvel at Arthur's fake smile.

As we near the date of the event itself (two weeks tomorrow), more and more people are volunteering Tales of Horror about their own or other people's experiences. Do you have a tale to tell? Perhaps you could add it, via the comments section, to the delightful ones we've had so far. I've heard tell of masses of spontaneous vomiting at the finish line, of men's shirts streaked with blood from nipples rubbed raw on bobbing vests, and (my favourite) the girl whose toenails all turned black and fell off afterwards. Eek :-/

Mike's off in Wales at the moment, to put his house on the market, and today ran from Bangor up to his parents' place. The boys and I are stoically holding our own over the Easter weekend, having fun in the sunshine at the fair and in the park. We're hosting an easter egg hunt at our house on Tuesday (by which time Mike should be home), then on Thursday setting off to spend a night at this beautiful looking place. I only found out afterwards that it is very close to a model train museum and small steam railway - hurrah! Arthur will be in heaven.

Patientline

2007-04-05T19:28:00.000+01:00

You may have heard of Patientline on the news recently, or had the misfortune to be at the mercy of their services. These guys are predatory bastards, turning a fat profit from the misery of others.

PatientLine provide "bedside communication and entertainment systems", for which they charge an arm and a leg. The first time Arthur was hospitalised with cholangitis he was four months old, and only six weeks out of his last operation for hernias. He was kept in solitary confinement because of his condition, which meant that we only left his tiny hospital room for blood tests and the re-siting of IV lines for antibiotics. The room was right by the nurses station, and had a big internal window with no curtains, only a token screen for privacy. Those were ten of the longest, most miserable days of my life, one of the few times when I think that this waiting game with Arthur's health really got to me, and started pushing me beyond coping. My family were still far away then, in St. Andrews, but called regularly on the oh-so-convenient PatientLine phone. The total cost of sanity-saving calls over that time? £150. One hundred and fifty pounds.* Not including the money that I spent calling Mike, who had to work, and others.

Some people are stuck in hospital for a long time, and can't pop out to use their mobile or the payphone in the hall. At the time I wasn't happy to leave Arthur at all, because unfortunately some nurses are much more sloppy when you're not watching, and because I couldn't bear the risk of him waking and screaming without me. I don't think it's okay to charge 26 p/min for the use of a bedside phone. I don't think it's okay to charge people who are too exhausted to read to watch the telly. With the NHS in the financial mess is seems to be in there must, must, be a better way to provide these services that balances realistically affordable access for patients with a small income for the PCT looking after them.

Grr!

* This covered approx. two 15 min phone calls a day

Marathon training, part 3: half marathon race update

2007-03-29T20:22:00.000+01:00

Mike ran the Reading half marathon last Sunday, and to our collective relief did not fall down in a crippled heap at the end of it. Nor did his knee swell up like a water balloon, or his right arch fall down like London Bridge. Not bad considering some runners had to be stretchered off :-/ Rather, he did very well. A chip strapped round his ankle that timed the race from when he crossed the start line 'til when he crossed the finish line showed that it took him precisely 1 hr, 45 mins & 12 seconds to cover the 13.1 miles. His finishing position was 2,740th out of about 14,000 runners.

Only 23 days 'til London...

Smash! Crash!

2007-03-21T21:25:00.000Z

...and through the fundraising target we go :-) Thank you so so much to those who have sponsored Mike to date - wow! Today we received our first donations from strangers, which initially gave me a bit of a funny feeling (especially as we haven't appealed to the wider public yet). But Google has its ways, and I now know who you are and how it came about ;-) CLDF have issued a press release, and Mike and Arthur will be featuring in the local paper shortly.

Mike's training is going well, despite his dodgy knee, which is being propped up by ice packs and ibuprofen. His number came through for the marathon: 37,301. This weekend he and his sister Caitlin are running the Reading half marathon as a warm-up.

Our trip to Scotland was both sad and beautiful, as we were going to say good bye to a friend. That was very hard. However, we also went to Edinburgh Zoo in the pouring rain, and were rewarded for our hardiness by having the place nearly to ourselves and most of the animals indoors where we could see them. Kate (my mum) was the Chimpanzee keeper there, many years ago. Arthur loved it. After a couple of days in Edinburgh, where I also got to catch up with some family and old friends, we headed north to Falkland to stay with the truly Great Aunty Anne. Unfortunately I was ill, so many of the delights on offer had to be bypassed (waterfalls, tunnels, sheep), but we did make it to Tentsmuir --

Kate and Tracy own an acre of land and an old fishing bothy in the forest on the edge of this beach. We held Arthur's first birthday here, and plan to do the same this August for his and Sylvan's 3rd and 1st. (They're both June babies, but school holidays dictate.)

Sylvan! The boy's coming on in leaps and bounds. He can crawl (ish), and pull himself up to a wobbly stand. The other day he was picking up 2ps and putting them in a money box with its lid off - pretty impressive, I thought! Plus he has figured out how to feed Maisie at the dinner table, deliberately dropping food over the side of his highchair, then leaning over and laughing with delight when she eats it. Maisie is now banished to the sofa at mealtimes :-/ Terrible spoilsport mother that I am.

Arthur's on good form for the most part. His imaginitive play is on the increase, as are his social skills. We've recently made some new friends who he gets on well with, and have started going to a new playgroup. Speech is fantastic and often very entertaining, though I must confess I am tiring of passing comment on the number of exhaust pipes possessed by every car we pass. Pre-school in September suddenly feels very close. Health wise there are a couple of things that are giving me the creeps, but we'll just have to sit tight, as ever. He complains of having a sore tummy a lot, though this may be an attention seeking hang over from the last time he was ill, so we do not make a fuss about it. Damn heamorrhoid is still hanging about :-( Yuck, what a bad choice of phrase - sorry! Plus he is definitely more tired at the moment than he usually is, and is not eating well (in terms of quantity). Hopefully a growth spurt is coming his way.

I got the morning of Mother's day off and have started implementing my new allotment plan, which made me very happy. Today I took both the boys out on the back of our brilliant Pashley tricycle for the first time, a bit hair-raising but Arthur's used to it already, and Sylvan evidently approves 'cause he didn't cry and promptly fell asleep. He carried on slipping half out of the seat until I strapped him in with a bungee rope, heaven knows what the passing car drivers thought. Maisie? She goes in the basket.

Back soon

2007-02-25T11:50:00.000Z

I'm taking Arthur and Sylvan to Scotland today. We'll be gone for at least a week, and it's unlikely that I'll get a chance to post or email in that time. If you're in Edinburgh or St. Andrews then you may well be hearing from me soon, if not then until we return - adieu!