A weekend update

Half term week seems to have passed very quickly. Rearranging some furniture and having a blitz on the toy epidemic has been satisfying. As usual, trying to make sense of the chaos that is my home is an ongoing project. I have a vision, where I can actually find things without running around tearing my hair out.

On Tuesday we took Billy Rubin to the Coventry Transport Museum, so at least he has done something of note during his visit here. We also had an enjoyable time meeting up with friends from school, although it was quite scary seeing nine children tearing around a house.

Unfortunately the Hugs and Hope day had to be postponed. Nish's little boy Kian was poorly and had to be checked out in hospital (happily he is fine now), and Jane and I decided to save our energies for a date when more people could make it. It is hoped that a new event will be scheduled before Christmas, with a Midlands location, with the first weekend in December looking to be a distinct possibility.

We have also made a start on our Christmas box. Caitlin's school are acting as a collection centre for the Samaritan's Purse Christmas boxes for children. We are doing a box for a girl aged from 5-9. The boxes go to poor children in eastern Europe and Africa.

Hannah had her blood test yesterday in preparation for a visit to the outpatients clinic at the local hospital this Friday. As usual the pre check up nerves are starting to build, and the big question nagging at my mind is "Will he be able to feel her spleen?", which would indicate a worsening of the portal hypertension. The tension is heightened by the fact that the clinic has moved to the new hospital and we are going on the bus, both of which are unknown quantities.

I finally get to have my hair cut on Tuesday. Be gone, shaggy mess. I completely forgot to go to my scheduled appointment three weeks ago, and then my hairdresser has been on holiday since.

I have had yet another run in with British Gas this week. I will recount the saga to put my unbridled rage into context.

* December 2004. We move into our house. British Gas ignore our instruction to transfer monthly direct debit payments to new account. A large debit balance is run up, and we end up with high monthly repayments.

* December 2005. Having finally paid off the previous debit balance, we have a new gas meter installed. British Gas fail to charged us for gas used on the new meter, refund us all the money we have paid to cover the winter gas use....yep, large debit balance again. Sigh.

* July 2006. Despite us being on schedule to pay off the debit balance again, they write and inform us that our payments need to increase by £13 per month. Ring them. They agree to keep the payments the same.

* August 2006. Notice that British Gas have not taken August payment. Email them. 12 days later, after no response, email them again, threatening to switch to a different supplier. After a further 10 days (22 days altogether, just to underline it) I get a response saying they DID take the August payment. No, they didn't.

* October 2006. Gas statement arrives. August payment shown as rejected (????). STILL have a debit balance because of this. They inform us they are putting our payments up by £17 a month. Ring them. Get put through to complaints department, who refuse to deal with me as my name is not on the bill (Andy's is). They inform me that once Andy has phoned them to authorise me to 'discuss the case' then I can ring back, and I don't need the complaints department, because any customer service operative can deal with my query.

* Summary...goodbye British Gas. Sort your customer service out.

I have also been furious about the proposed quota of non-religious or other faith children in faith schools. The government did a rapid u-turn on this before I even got chance to send the following letter I wrote to my MP, but as the Lords are now trying to push it through, I shall go ahead and send it. And here it is.

I am writing to express my concerns at the proposed amendment to the Education and Inspection Bill which seeks to impose upon faith schools a quota of 25% of pupils from different faith backgrounds or with no religious affiliation.

The reason being given for this is that faith schools are socially divisive. In my experience, nothing could be farther from the truth. Just this week, my oldest daughter, who has just completed her first half term at a Catholic primary school, has been learning about Diwali and making Diwali greeting cards and lamps. Her year group contains children from Irish, Polish, French, Spanish, Afro-Caribbean and Asian ethnic groups.

It is also my experience that Catholic and other faith schools, and in particular secondary schools, are actually more demographically diverse than their non-affiliated counterparts. They have far wider catchment areas, resulting in a greater range of social backgrounds. The Catholic secondary school that I attended had a catchment area including the wealthiest areas in Coventry and some of the most economically deprived.

In my opinion, the root of any lack of social cohesion in this country does not lie within faith schools. Conversely, the high emphasis on morality, care, compassion and tolerance within these schools can only be of benefit to society as a whole.

I am outraged at the prospect that if this bill becomes law, my younger daughter will face a real risk of not being able to attend the same Catholic primary school as her older sister. Instead of the 60 places available to Catholic children within the parish, there will only be 45, and the school is already oversubscribed. She could be forced to go to a non-faith or other faith school, and a non-Catholic child would have to attend the Catholic school, just to satisfy a quota. I find it impossible to see how this could be in either child’s best interests.

I strongly believe that the proposed bill amendment should not be made law. I consider it a contravention of the rights of those who place emphasis on the role of faith in education.


In my thoughts and prayers in particular recently are Jackson and Dillon. Both these babies are very, very sick and their parents are going through hell. I hope so much that they can both turn the corner. Please keep these families in your thoughts, and say a prayer for them if that is your way.

More Soon

It was so foolish of me to announce that I was going to blog more. The trouble is really that if I am actually doing interesting things I don’t have time to write them down. Lots of things I want to go into in detail, but none of them yet ready. In the meantime, a brief summary.

The CLDF Conference was fantastic; meeting up with a number of friends, and hearing some very interesting information. I have a first draft of my notes from the Biliary Atresia talk typed up, and I hope to have a finished version published here within a couple of weeks.

There was also some more information about Sulphasalazine and other possible treatments for liver damage; again, watch this space for more details.

The CLDF e-talk forum was also launched, and is already proving to be a useful resource for families in the UK.

At the conference we received Billy Rubin, the Liver Families Travelling Bear. I am ashamed to say he has been sleeping in Hannah’s bed ever since, but I have a couple of exciting trips planned for him before he leaves us in a week’s time.

That brings me on to the next exciting event, the first UK Liver Families Hugs and Hope Day at Kew Gardens next Thursday. I’m very much looking forward to meeting up with Janey, Nish and anyone else who can make it. I am also a first time visitor to Kew (a bit scared of London!) so that is an added interest.

I’m also keeping the girls busy on Wednesday, when we are meeting up with some friends from school at one of the other mum’s houses. With needing to take Billy Rubin sightseeing as well, it seems like the half term week will be full.

If you read Hannah’s blog, you will know that she has portal hypertension; not too severe, but enough to up my worry level a couple of notches. Today marks two years since she was discharged from the hospital, and I still find it hard to believe she hasn’t been admitted again since.

Caitlin is enjoying school, but very tired, and I think the half term week is coming just at the right time. Tomorrow afternoon her class are putting on a ‘Here I Am’ assembly. She has to say “I can sing a song for you”. Feeling nervous already.

I am very busy with a new project at the moment, something I am really excited about. It is in very early stages right now, but expect more news on that soon!

In anticipation of Saturday

Firstly, apologies to Elly for any insinuation that she is more boring than CBeebies. Perish the thought!

On my mind tonight is the upcoming Children’s Liver Disease Foundation Annual Conference this Saturday, which I am greatly looking forward to. Last year was our first visit (the year before we were just becoming aware that we were actually affected by childhood liver disease) and I found it to be an excellent event. My only regret was that I didn’t take any notes, and couldn’t remember a lot of it afterwards.

It is hard to know whether I am more excited about the conference itself or the chance to meet up with my friends. I can’t wait to get together again with Elly, Danielle, Jane and Nish, and to meet Liz and Alex for the first time. We are also planning a group photo with the Liver Families travelling bear Billy Rubin, whom Liz will be bringing to the conference and handing over to us! I am very excited about Billy Rubin’s visit, and plan to take him on a grand tour of Coventry!

The agenda for the conference looks excellent this year, as does the panel of experts. I hope to be able to personally thank Prof Millar for the clearly excellent job he did with Hannah’s Kasai….I haven’t seen him since she was discharged. I had this hope last year, but it was hard to be disappointed when the reason for his non-attendance was that he was carrying out a transplant. I plan to attend the session on ‘Biliary Atresia – Past, Present, and Future’, which should prove extremely interesting.

At last! A visit with Elly!

I started a post about CBeebies (I see you are on the edge of your seat – told you I planned to get more boring) but after being interrupted halfway through, finishing it seems like a TASK. My blog is not supposed to be a TASK. So something else for now, so at least I can post something.

I finally got to meet up with Elly and her boys today, after countless attempts which have had to be aborted at the last minute. Having seemingly overcome Arthur’s inexplicable ability to develop a skyrocketing temperature the night before any planned meeting (more on that later), Hannah and I set off for Oxford this morning.

Having stopped to top up with petrol, I thought I would text Elly to let her know we were on the way. I couldn’t find my phone. I drove home to get my phone. I couldn’t find my phone. I checked my bag again. I couldn’t find my phone. I went back inside. I couldn’t find my phone. I rang it. The bloody thing was in my bag. Why wasn’t it there before?

Things went smoothly from then on, and we sailed down the M40, although I had to keep up a constant commentary to keep Hannah amused….she is excellent at whining already. I was all prepared to come off at Junction 8. It had looked very close to J8A on the map, and I was surprised to keep driving onwards with no sign of J8. Finally…the sign appears…J6! How have I missed out 7 and 8? I thought I was concentrating. It was only later I noticed that junctions 7 and 8 only have access from the northbound carriageway..... Leave at J6, back up to J8, and at last I am on the home stretch to Oxford. Or at least I would have been, if there hadn’t been major roadworks on the A40, followed by evil traffic in Oxford…completely understand why Elly doesn’t have a car. Finally, we arrived, and I ably demonstrated my lack of parking skills to Elly and the boys.

Our visit was lovely, but far too short, as shortly after 2 pm I had to race back (only a slight exaggeration) to collect Caitlin from school, fortunately without any of the travel problems of the outward journey. Better planning on my part is required next time. The highlights were: cuddling Sylvan, who is just edible; a yummy lunch (although not in the opinion of Arthur – “No!” and Hannah “It’s yucky” – don’t you just love cooking for children?); seeing Arthur and Hannah feeding the chickens; meeting Elly’s delightful mum Kate; and at least touching on some of the topics that Elly and I have been wanting to chat about.

Of course Arthur eventually ran true to form, and just as we were about to go, yep, 38.6C.

Coming soon - higher output, even lower quality

My blog is supposed to be ‘A Place to get my thoughts together’. Sometimes I forget this and remember that people actually read it, and that most of my thoughts are far to boring for people to read about. Maybe I would be better off with a private diary; but I wouldn’t bother to write properly if I didn’t think people might read it.

What the previous passage of gibberish is really trying to say is that I am going to make more posts about even less interesting stuff, to try and make space in my brain for any interesting stuff that might just come my way.