Haemangioma - Update

 Thea’s scans all came back negative and she was started on the Propanalol treatment as well as continuing on the steroids. The steroids were steadily reduced each week until, just before Christmas, she stopped taking them completely. She is still taking the propanalol.

Thea’s breathing improved almost immediately when she was started on the steroids, although it would come back a little overnight. Since we left Gt Ormond Street, after spending nearly two weeks there, her breathing has been fine and has continued to be ok after stopping the steroids. The haemangiomas have been reducing in stops and starts. There seems to be no change for a week and then suddenly they will reduce. Since starting treatment in September the visible birthmarks on her lips and in her mouth, as well as on her ears and spine, have completely disappeared. The large patches in her nappy area and on her legs are still visible but have recently started to shrink and lighten so that, while still visible, are nowhere near as prominent as they were.  

Thea herself continues to grow normally, and she is still generally very happy apart from when we have to wake her to give her the medicine. 

More information on haemangioma and other birthmarks can be found at the Birthmark Support Group site: http://www.birthmarksupportgroup.org.uk/

Haemangioma

A couple of weeks after Thea was born she developed what looked like a rash on her leg. The midwife said to ignore it and it should go away after a couple of days. It didn’t, it got worse and seemed to spread further over her leg and also behind her ears. The midwife sent her straight to the GP.

The GP didn’t know what it was either. He gave her some cream and booked an appointment for her three days later. There was no improvement and so he sent her to A&E at the local hospital. There they diagnosed it as probably being haemangioma, also know as strawberry birthmark. They took some photos and booked a follow-up appointment and an ultrasound but did not really give us any information. For that we turned to the Birthmark Support Group website (http://www.birthmarksupportgroup.org.uk/), which is an essential resource for any parent who wants to know more. There we read a little about how for most cases it is best to leave haemangioma alone – it grows for a few months but then starts to disappear and is usually completely gone after a few years. But there are also warnings – that there is little real understanding or knowledge in the general medical community about treatment of haemangioma, that they can become ulcerated and very painful and, most importantly, if they appear on the mouth, around the eyes, ears or nappy area then there can be complications.

By the time we got the appointment with the paediatrician (probably only a couple of weeks later) T had developed a large mark on her leg, a small one in her nappy area, small patches around and in her ears and on her lips. The paediatrician discussed it with us, confirming a lot of what we had learnt from the Birthmark Support Group and saying that we really needed to see the plastic surgeon and seeing him was a bit of a waste of time. He also, because we asked for it, said he would get an ENT appointment to check her mouth.

The plastic surgeon appointment came though quickly, which was good, but the appointment itself was terrible. There were two other doctors in the room who were not introduced to us and we were generally made to feel quite intimidated. The surgeon refused to answer several of our questions and gave us information that was wrong including saying that if the marks became ulcerated it would be a good thing and that the marks on her lips would not become ulcerated; Her lips can become ulcerated and if they do then they can stop her from feeding because of the pain and are difficult to heal. It seemed like the answer he gave was based on a guess rather than any real knowledge. A recent news item in the MEN (http://www.manchestereveningnews.co.uk/news/s/1130568_email_saved_babys_face) seemed a warning of what was going to happen to us if we left it like this. So Zak decided to get in touch with Gt Ormond Street Hospital. She emailed some photos and they said we should come down as soon as possible. We arranged that for Wednesday 23rd September. They organised the referral from the plastic surgeon. We still had no appointment with ENT. They said that she would be assessed and hopefully put on a new drug that is being used for treatment of strawberry birthmark and that we should be out in three or four days.

Then Thea started rasping, her breathing became noisier. She has always been a noisy and active baby but this was different. The sound would come and go. Unfortunately when Zak took her to the GP it was quiet. The GP said it was likely a bit of phlegm and common in babies. That kind of felt like enough that we should not worry about it.

We did receive an ENT appointment for the middle of October, but then a few days before we were due to come to London they called and asked if we could come in earlier. We had a holiday booked and said we were going to GOSH the next week so they decided that we did not need to go in then.

While we were away for the weekend T’s breathing noises continued to come and go and, very gradually, got worse. I was starting to get very concerned about it – her cry was very raspy, her breathing seemed ok but often noisy and very occasionally she would seem like she needed to catch her breath. It was only another day before going to GOSH.

When we got to London we were received with the greatest amount of attention and speed I have ever received in the NHS. The nurses and doctors here have been wonderful, attentive and, above all, have known exactly what is going on and what needs to be done.

They picked up on her breathing. They said this could be down to a birthmark in her throat and that it needed to be checked out asap. They called in their own ENT people and Thea was put on a waiting list so that she would hopefully be looked at the next morning. As she would have to be under general anaesthetic this meant no feeding from 6am. They also noticed something else we had previously been told not to worry about – a scar on her stomach which she has had since birth. So now we had not one, but two additional things to be concerned about. They started doing more tests – for her heart, and decided to prescribe steroids to try and start treatment of her birthmark to try to reduce the one in her throat as soon as possible.

The next morning we got the slot to check her throat. They confirmed the haemangioma there was blocking off her airway by about 60-70%. The steroids have worked quickly to reduce her rasping so immediate surgery is not required (but we have a follow up in a couple of weeks to make sure).

That day we also had ultrasounds of her spine and internal organs. Those, and the results from her heart scan, came back as fine. This was a relief as it seriously reduces the chance of the other thing the doctors are concerned about which is called PHACES syndrome (the S is new and and stands for Scar).

We are not entirely out of the woods yet. Thea still needs to have an MRI scan of her brain to confirm that there is nothing there and that she will be able to go on to the new drug instead of steroids. This new drug, propranolol, is more effective than steroids but can’t be used if there is a chance it will reduce blood flow to the brain (for obvious reasons). As MRI machines are very booked up we don’t know when this might happen and because of her breathing (it still comes and goes) the doctors don’t want to let her go yet. And even if they do we are already looking at regular follow on appointments for the next year, at least.

Fortunately Thea has proven herself to be a happy soul, rarely complaining about the prodding and starving she has been put through. But the main thing is that Thea is getting the best treatment she can get and the GOSH team here are absolutely fantastic. Hopefully we will be able to go home soon once everyone here is happy with her progress and we have the MRI out of the way.

Great Ormond Street Hospital: http://www.ich.ucl.ac.uk/

Bad Login Page of the Week - Emusic

I've been meaning to start posting when I find bad login pages. They annoy the hell out of me. I understand that logging on is part of the process of creating the whole personalised, big love-in feeling that comes with returning to a site but there are times when it feels like the site just doesn't want to let me in.

Emusic is an example of where it has gone wrong but could easily be set right. When I visit emusic it remembers who I am - presumably through a cookie - and so gives me recommendations. Overall it's a pretty good service and they have some excellent music. But, whenever I "do" something, such as bookmark an album for later download or even make a purchase, I am taken to the log-on screen again. OK, fair enough, I don't mind validating that I want to make the purchase. Firefox remembers my username and password form me so all I should have to do is click on the log-on button or, more likely, press the enter key and sail straight through.

Except that the page is poorly designed. Instead of recognising that I already have an account, and that it even knows who I am, it pre-selects the "create account" option forcing me to click two things in thwo different locations. Then it follows it up by completely forgetting what I wanted to do, forcing me to do it again.

It's idiotic.

It's bad design.

A list of my emusic purchases

Live in Manchester and Dublin - Rodrigo y Gabriela
Violin Concerto/Company - Philip Glass - Adele Anthony
Select Classical Chinese Music - Various
Steve Reich: Music for 18 Musicians - Grand Valley State University
Shostakovich Symphony No 5 - LSO
Best of John Lee Hooker -
Soul Men - Sam and Dave
Chinese Dub - Jah Wobble
Bad Medicine EP - Liz Green
Joys of Spring - John Fairhurst
Steve Reich: Different Trains - David Robertson
Howls, Raps and Roars - Allen Ginsberg
Sound unbound - DJ Spooky
Beethoven Violin Concerto - Isabelle Faust

Icy canal

Test

Nano finish

Despite a higher than average intrusion of real life I managed to finish my novel for Nanowrimo this year. It was a close thing though. I found myself ten thousand words (one fifth of the target!) behind come yesterday morning. I started by spending some time planning that last ten thousand words and then got stuck in. I wrote six and a half of them yesterday, leaving me with a smaller target to hit today. I kind of went for it because I knew I would be out for this afternoon at my parents to see Debbie and family. And it paid off.

But is it any good? Well, probably not. It's quite a different story to ones I've been writing recently. It's not science fiction, but more of a straight, literary novel set in China in the early 20th Century. A time and place that I still find fascinating, and probably stranger than anything I could dream up for SF, it gave me a historical structure that always meant I could find some inspiration. The main pattern of the story came to me pretty much fully formed and I've mostly stuck to it. Despite deviations here, and the odd surprise, it's pretty much the story I had in my head and, looking back now I think that yes, it is good. Not in a letting anyone else read it kind of way, just yet. At the moment it's more like a pre-viz, or storyboard, for a movie. All the pieces are there, sketched out, but the actual film is yet to be shot. That's the next stage. Move it from the flat, cartoony writing that describes what I want it to be into the thing that it actually is. I'm looking forward to it. But for now it's time to read that Hellboy comic I treated myself to yesterday.

(b)ankers

From Doonesbury -

"Marshall Plan, Louisiana Purchase, Race to the Moon, S&L Crisis, Korean War, The New Deal, Invasion of Iraq, Vietnam War, NASA."
-- list of government expenditures which, combined, are still less than the current bailout

We could probably end poverty and go to Mars if we closed all the banks. Hmmm...

Nanowrimo begins

The nice thing about starting on the weekend is that you have plenty of time to do all those things you really have to do before settling down to write a novel. Things like installing a new, untested operating system on the laptop you need to use to write on, catching up on Facebook and emails, trying out the new features of your new operating system and playing with your colour scheme. Downloading some new desktop backgrounds for your PC. Reading about the Royal Australian Navy because it's the Wikipedia article of the day. Still, it has been a successful weekend and I'm even a little ahead. Back to work tomorrow but hopefully I can just keep plugging away at it in the evenings and get to next weekend with a reasonable word count. My mistake last year, when I failed to get much past the second week, was having days where I simply did not write. While that was not entirely my fault once you get behind it is a big challenge to catch up again.

Long time

Took a long break from doing my writing blog but finally broke the dry spell tonight with a silly new thing. Almost tempted to write about the spider from my dream last night but managed to avoid it. It was about a foot across, with legs like gnarled tree branches and strange, bright orange nodules on it's underside that excreted some kind of pus when it launched itself with a thud against the window I was standing next too. But this is much nicer.

Honeymoon

We had a brilliant time in Crete for our honeymoon. Mostly we didn't do very much apart from eat a lot, lie on the beach and read but it was much needed. The hotel was nice and it was easy to get into the old town to have a look at the tacky shops or go for a nice meal. We did manage to do a couple of things; Visit the Minoan ruins at Knossos and walk the Samaria Gorge. By coincidence the walk day was also the worst weather we had - frequent drizzle - but as we were hiking that wasn't much of a problem.

www.flickr.com

We visited Knossos the lazy way, on a tour, and that was a bit disappointing. Half the tour was in German meaning that you just stood around half the time wishing you could be exploring the site more and also the route through the site was pretty constrained so I feel that there was more that I could have seen. Serves me right - it wouldn't have been hard to get the bus, just laziness.

I also had plenty of time to research my new book which I am getting really excited about. I've decided to save starting it until Nanowrimo in November.

Wedding

Quick description before heading off to honeymoon.

Woke up. Had bacon and eggs cooked for me by Dad and then headed out to collect the cake and pick up Emily who needed a lift into town to get ready with Zak. Was a bit late meeting up with Anthony at the train station but that was ok because his train was late. Next went to the Palace Hotel to drop off the cake, the various other bits we had and Emily. Headed back to my parents where Anthony suggested going for a pint. Waited a bit for Debbie and Simon to turn up with new baby Oliver and then we went to the pub while Dad went to pick up Alan. Had a Guiness, which I haven't had for a while and really enjoyed. When we got back there was a bit of rushing around while everyone got ready and then the minibus taxi turned up. After a lot more fussing everyone finally got on board and we collected Lucille and Bob, and then Vicky John and Alice. Got stuck in traffic on the way into town which was a bit worrying as it was the Labour Party conference and a Stop the War demo next to the hotel that afternoon but everyone was actually going somewhere else, traffic cleared up and we sailed into town with plenty of time to spare. Checked the room over, came down and had another drink, went back to the room to see if the registrar had turned up and found the seats had been rearranged again. Confirmed I was who I am with the registrar and then people started turning up. Ceremony was supposed to start at four. At five past there was still no sign and someone came to say there had been a slight problem and the bride was running late. Finally, at twenty past, the registrar came in and announced that things were starting. Alice, as flower girl, came in first and did a marvellous job covering the aisle with petals. Finally Zak walked in looking absolutely stunning. Andy did a brilliant job of the reading and then the ceremony started. It didn't feel rushed, it felt just right. We went out to the theme from Once Upon a Time in China and drank champagne as we walked downstairs where everyone shook our hands. Drinks done it ws time to try and get photos organised which was pretty chaotic (but based on a quick look through yesterday it all worked out) and then into the meal. Slight problem with the seating arrangements but that got sorted. Food was really nice, although it was pretty late. By the time we finished a number of the evening guests had arrived so we decided to move the speeches downstairs, which was really nice. Anthony's speech was also great, not too embarrasing or too formal. After that we had our first dance to Israel Kamakawiwo's version of Somewhere Over the Rainbow and after that it was just more drinking and lots of dancing. I had a really, really good time and Zak did too. Thanks to everyone who came and made it a fantastic day.

so simple it's ridiculous: cross browser ad blocking for your pc: http://everythingisnt.com/hosts.html

a week off

Finally, some time off work. The plan has been mostly just to do as little as possible which has meant doing some of the obvious things, like video games and olympics watching, but I've managed to get some other stuff done too. I went for a walk from Edale up Mam Tor on the Monday, which was very wet and a disturbing reminder of how unfit I am at the moment but very enjoyable. Had a good view of several kestrels hunting from the top of the ridge.
Zak's sister is staying with us at the moment which makes the apartment feel pretty small. So on Tuesday I went to help my dad clear out the carpet from the spare room and leave the car there to save having to find somewhere to park it every day in Manchester. On Wednesday Crystal and I met Zak for lunch at the Manchester City Art Gallery. It was full of kids for some summer event but I broke off to go and see a new exibition and Crystal spent some time looking at paintings. I left her there and went home to watch Election 2. That is an excellent film. It's got some pretty nasty bits in it but overall is a bit less ott than the first film and less shocking. It is still a good look at the triads in a pretty unglamourous light and confirms Johnny To as someone to watch. Which is nice because when looking at the Cornerhouse web site I saw that another film of his, Mad Detective, was on this weekend.
Mad Detective was a really interesting film about Bun, a mad detective. He may be psychic or he may just be mad. Unlike the average film in this genre it doesn't shy away from the fact that Bun really has no grasp on reality, whatever his talents might actually be, and is a real danger to those around him. Bun's visions are brilliantly realised and the acting quality throughout is superb. Films like this, and the Election series, show just how good Hong Kong film making can be.

Nearly two months since the last post. Been very busy with work, not feeling too good about that but things look set to get better. Bt then they always do and yet seem to manage to get worse. I've taken a week off work, which I really need. Hoping to get out for some walking, as well as doing some writing and other stuff. Didn't do my gr-sf piece last week which is bad, but this past week has been pretty disrupted as Zak's sister is staying with us now.
Went to see Wall-e and Batman recently. Wall-e was very good, as good as most other pixar films. The robot does look a bit rubbish in the pictures but when you see him animated it's a completely different story. The animation is gorgeous. The only thing wrong with the film is when the humans get involved. They aren't that engaging and that kind of spoiled it a bit for me. But, it's a kids film and it has a message and that needs humans, not a peculiar romance between to robots.
Batman is also excellent. Heath Ledger's performance as the Joker has gotten a lot of comment and it is a great performance. It evokes the best of the best comics; Dark Knight Returns, Long Halloween, Arkham Asylum and creates a serious film out what could have been just another action film.

a lot to get through

I've been coming up with ideas of blogs entries regularly, running through them in my head and then forgetting all about them. Work has been busy and when I've been able to sit at a computer I've generally been trying to catch up on email (not so successfully) or do some writing (not so successfully). But, it's Sunday morning and it's raining so I'm going to get through a few of the things on my mind.

This post will not be as serious as David's latest, which I recommend you read. The UK has long had a good reputation for taking care of refugees and it annoys the hell out of me that this reputation is being eroded and destroyed with lies.

http://beardadventures.blogspot.com/2008/06/treatment-of-asylum-seekers.html

Ubuntu
I upgraded to Hardy Heron, the latest version of Ubuntu, a few weeks ago. I was initially doubtful as to whether I would do it or not as each release recently has had a few problems but this one went really well. It's a Long Term Support (LTS) release, which means that it is going to be supported for 3 three years after release. It goes a long way to neatening some of the rougher edges of Linux, although I'd have a hard time pointing out exactly what they are. It feels the same, just slightly better.

However, to be honest, I hadn't been using it that much as lately I've been leaning towards the mac. Reading about a couple of applications brought me back, though. The first is Gnome Do, a Quicksilver clone that is just awesome. It comes with some great modules, such as Google Calendar and Twitter integration, and I am really impressed with it.

I also learned that Lotus Symphony, a new office suite from IBM had been released. It is based on Open Office but with a different user interface based on Eclipse which gives it a very different look and feel. I have to admit i do not like Open Office. It's ugly, like using an office program from 10 years ago. The last MS Office release, with the ribbon, shows just how far behind Open Office is with its interface. So I was pretty excited about a new Office app for Linux that might actually be pleasant to use. Indeed, Symphony is pretty and it's clear that thought has gone into making it work. It has a tabbed interface, so all your documents appear in the same window whether they are a word processor document or a spreadsheet. It's all very nice and clear. I like it, and it might become my preferred Office app except that it's pretty slow. My PC might not be super new, but it's not that old and this is a Word Processor, for frack's sake, not the latest FPS. So until the speed issue is sorted out it's just not for me. Symphony is available for free download, for Windows or Linux, at http://symphony.lotus.com

So, although I am generally positive in my feelings towards Symphony I couldn't help but wish that Google documents was available offline. So imagine my surprise to learn that Google Docs is now Gears enabled, which means that it is available offline. So I can access any writing I am working on from any internet-enabled computer, work on it offline too, and get automatic versioning and offsite backup. Cool. The Google docs interface is continuing to imrpove, as well. It now works with a fixed width view (looks like print layout view). Google docs can be found at http://docs.google.com

Ficlets
And all of this is supposed to be so that I can write. I am keeping up with the weekly project, just about, which has been pretty good. Sure, there's some bad writing on there but there's also some interesting ideas and I'm enjoying it. As a kind of side project to that I've also set up an account with Ficlets. Ficlets is a site where anyone can add a short piece of writing and others can comment on it. You are free to extend it yourself, writing prequels and sequels, or use others' work as inspiration. It's an interesting community, although I haven't been quite as engaged as I'd like due to work, I've had some nice feedback. Mostly I've taken pieces from the blog and posted them there, which offers a nice opportunity to edit some of them and try to improve them. There is a very strict constraint on the number of characters that each ficlet can have which works to really force you to think about what is really necessary for a piece. See my Ficlets profile here.


Chess
I started reading the Yiddish Policemens Union by Michael Chabon a little while ago. It's set in an alternate history where a Jewish homeland is set up in Alaska instead of Israel. It's also a detective story which chess as a large element in the characters lives. It's funny and interesting although I never really felt myself empathising with the characters too much. The cleverness of the language was almost a distraction from that kind of engagement but that may also just be how I'm feeling at the moment. I do recommend it.

It also awakened within me a fascination with the game of chess and I've found myself mildly addicted. I'm trying to find people to play against, am playing daily chess puzzles (via a Google plug-in from Shredder chess) and have bought a book to try and improve my game.

Finally
Went to see the Revengers Tradgedy at the Royal Exchange Theatre last night. I like the Royal Exchange because it's in the round creating a very intimate experience. The play itself was well produced and entertaining, with plenty of dark humour and gore mixed in the same uncertain balance as a Tarantino film. There is none of the soul searching of Hamlet, just the steady progression of revenge with a purity of feeling, and joy at success, that leaves plenty to think about after the play is done.

Indiana and the Manchester Museum

Bank holiday weekend. Nothing much to do except read more of The Yiddish Policeman's Union. So decided to get out and do something.

First we went to the Manchester Museum. I've been meaning to go there for a while as I haven't been since I was a kid. My interest was piqued by the Lindow Man exhibition as I did not see it on any of the previous times it has been in Manchester. Unfortunately it was an incredibly disappointing exhibition. Things are laid out in a confusing manner with very little real information beyond what is in the leaflet. There is also a pointless aside as a whole bloody section about a woman who, as a girl at the time the Lindow man was found, was in hospital and got a Care Bear. And apparently Bros were popular at the time. I don't mind have the discovery put into cultural context but found it ridiculous that it overpowered the exhibition to such an extent. There is also a big fuss about showing respect for human remains but when you get to the case with the body in it there is nothing - no label, no explanations, nothing at all that would indicate that this is something you should pay attention to, let alone pay respect to. Everybody involved in putting the exhibition together ought to be thoroughly ashamed of themselves.

The rest of the museum, though, is definitely well thought-out and there is a lot to see. The Egyptian exhibition is entertaining, informative and interesting. The exhibition of stuffed animals is very much as I remembered it and still a little creepy. And there was more that we didn't get the time to see, especially as the normal entrance to the dinosaurs was blocked although the exhibit is apparently still open. Interestingly the bodies on display in the Egyptian section are all covered up with cloth and there little notices to say that this is an attempt to show respect to human remains and is being done as part of an attempt to stimulate debate on how we should treat these bodies and whether it is right to have them on display. However it all smacked of hypocrisy with the Lindow Man exhibition just downstairs.

Link to Manchester Museum.

And so, on to the next relic on show: the new Indiana Jones film. Like everyone else with a fondness for the first films and the burning rage of the Phantom Menace still too fresh in my mind I did feel a little nervous about going to see it. I re-watched Raiders of the Lost Ark on Friday. Cautiously I peeked at reviews to try and get a sense of what to expect without reading any spoilers. A mild optimism encouraged me to get it over with and so we went last night. I enjoyed it. It's an Indiana Jones film. Sure, it isn't as good as Raiders or the Last Crusade but it's still thoroughly enjoyable. I want to stay away from giving any spoilers but it really does feel like an extension to the other films. Like someone you haven't seen for a long time and then meet up with again, it's a bit awkward at first, and there's a few more grey hairs, but it's still the same person. I read somewhere someone say it is the third best Indiana Jones film and that's probably about the best summary I could think of.

Went to see Grindhouse last night at the Cornerhouse. It was the full thing - two films by Robert Rodriguez and Quentin Tarantino bound together with fake previews of trashy films and missing reels. I did not see either film when they were released separately but I'm glad I had the chance to see them together first. It was an intense few hours with a lot of gore and comedy on the way. The two films work well together as a complete experience but I don't know if I would be so impressed if I'd seen them by themselves or without a cinema full of expectant fans.
For me I think Planet Terror was the slightly stronger film with more of a plot and a typical Rodriguez sense of enjoyment over common sense. Death Proof was almost a relaxing romp afterwards with a simple two act structure, dialogue instead of plot and probably some of the coolest "real" car stunts I've seen in a long time.
It was the total cinema experience - fun films, good audience and uncomfortable seats. We laughed together, groaned and winced together and came out of it wondering if they ever will make Machete, probably the coolest trailer ever, into a full length film. I hope so.

Went to see Gogol Bordello last weekend in Leeds. They were fantastic, had a great time bouncing in the middle of a fun crowd. Aching a bit today. Now, I wonder if they do weddings...

This is realy interesting.
View here. Found on BoingBoing