Otto goes to Stamford Bridge

Apologies for being smug Dad but I just have to plaster this over all media available to me!
Otto doesn’t get enough of a mention on this blog and you can’t really write about AJ without including him because she is his world. His half-term homework was to write a biography of someone and he chose her!
Otto and I went to Stamford Bridge today to watch Chelsea v Burnley. He has gone from being completely uninterested in football to the biggest statto bore imaginable, it is amazing how geeky an eight-year old can be when they put their mind to it. Some family friends, the Fennells very kindly lent us a pair of season tickets in the most amazing spot. The match ended 1-1 but was very exciting and full of controversy. Going to the footie with my boy was just amazing. As Otto said “That was the most awesome experience, except for the swearing.” No racism but lots of rude words!
But then the cherry on the cake, Otto is the main focus of tonight’s Match of the Day. Brilliant!





One step forward, two steps back or two steps forward, one step back without actually taking any steps at all!

Hmmm, slightly incoherent title to this post I see. It is late and I find myself in a bit of a bind. I should go to bed but can’t just yet. A friend has given me a bit of Sonos kit to complement another bit of Sonos kit that another friend gave me. This might sound a bit dull to most people but I now think that I can stream my music collection from my phone via my computer to my ancient hifi also made up of bits of kit begged, borrowed and stolen from various loved ones. Trouble is that previously, the music had been cutting out so I need to listen to a whole album to make sure it really works. And that album can only be Bowie’s The Rise and Fall of Ziggy Stardust and the Spiders from Mars, it was my first tape, first record, first CD and first mp3 download (I was probably proving a point by that stage) so naturally it should be my first fully streamed album. So far so good, so thanks to you Simon and Ruth.


AJ finds a silver cup full of brandy butter and a spoon – pig in shit!

Ava-Jane news: she is doing amazingly well, her speech has progressed incredibly in the last few months. She is more engaged and active than ever before… but she might have epilepsy! Hence the not knowing whether she is going forwards or backwards. She has developed a shake in her right hand, which in my most optimistic moments, makes me hope that she is regaining some sensation/mobility there but, on the other hand, might just be some sort of epilepsy.

Blimey epilepsy! I know people who have suffered from “petits mals” where you just zone out for a couple of seconds and other people who have had their brains completely fried by the most horrendous seizures and this is all called epilepsy. But when you read up on it (and you really shouldn’t, in fact the internet is the worried parents’s worst enemy) there’s a whole load of epilesies. The trouble is trying to muster the strength to find out what’s wrong, if indeed there is anything wrong. It will probably mean another round of MRIs and EEGs, which we went through when AJ had her original post-chemo brain damage. Lying still is not one of AJ’s strongest traits, so expecting her to lie still while she gets put into a massively spooky humming tube or has a whole load of nodes attached to her head is not really reasonable. So she would need general anaesthetics and as she has veins like a junkie from so many intravenous injections, that is never much fun. I found this picture of her looking royally pissed off when the only vein they could find was in her head and they had to put a tube in there!


But really I think it is two steps forward and only maybe one little step back. By this stage, we do not get surprised that AJ has some new medical challenge, and thus far she is entirely Ebola free, so that’s something. So the real marvel is watching her progress. She is communicating at a level that she never has before, which is great but it does mean we have to readjust how much heed we have to pay her. When she is clearly telling exactly which book she wants you to read her, it is a bit tricky to try to palm her off with the one with no more than five words, that means you can get back down to your dinner that much quicker. These days she wants a proper one and properly read, with no skimping on the pointing at all the main characters, thank you!

I really must got to bed. I was halfway there about three hours ago. I have got through not only the whole of Ziggy Stardust but also the whole of Bob Dylan’s Pat Garrett and Billy the Kid, my next most seminal album, without a hiccough from the Sonos. Buenas noches.