Wednesday 24th – Thursday 29th August
Wednesday was meant to be an action-packed day of tennis for Joseph, but proved a bigger let down than an Andy Murray semi-final. Rain didn’t quite stop play, but the whole thing lasted two hours instead of five which meant I couldn’t whiz up to London and swap over with Claire. Instead I nipped into Bromley and stocked up at the 99p shop. I’d love to know why they have a security guard there. Even if a gang ran off with half the shop, it would come to less than the minimum wage. Joseph enjoyed himself at tennis, but the coach takes me to one side to tell me he had a little cry about his brother. I’m assuming he means Josh rather than Alex but have to ask Joseph to be sure. We drive to GOSH and he soon cheers up. We escort Josh down to audiology, where he has so much wax sucked out of his ears we could make enough candles to fill St Paul’s. Unfortunately, it doesn’t appear to improve his hearing one iota. He wants to go out and, as the sky’s miraculously cleared, we all enjoy a picnic (of sorts) together in the park. Josh fades fast on the way back and goes straight to bed, waking around 8pm and staying up until midnight crooning to the nurses.
Thursday is a dull, overcast day that brings so little light flooding into our room that I lie in until nearly 9am, which is pretty much unheard of. An unexpected appearance from a volunteer means I can nip out for a King prawn curry at noon to break the monotony. Josh has a good, active day once he’s awake with no afternoon nap for a change. Blood results from his second infusion in Italy suggest the new lymphocytes are fighting JC but there’s nothing spectacular to report. He’s had his third clear test for norovirus, so he can leave his room next week to go to the gym. The home care proposal from the hospital is he has two hourly sessions a week with an occupational therapist and three visits from a physiotherapist. Whilst the cost of this is significantly lower than sending him to Tadworth, we’ve been told we’re unlikely to get it as there are so many children with far greater disabilities. Claire’s quick to point out that for many of them therapy will not make a difference, but for Josh it could play a fundamental role in helping him to realise his potential and live a more normal life. It’s a really valid point, but may well fall on deaf ears – and I’m not talking about mine or Josh’s. We’re in the hands of our local council here, and that’s never a great place to be. Doctor Robert emails me to say that Joshua’s cuddly cat given to him by the CAT team that transported him to Italy has been found and will be returned, washed and sterilized next week. Are you allowed to sterilize cats without the RSPCA kicking up a fuss these days ?
Josh is counting down days the days to Batman Live. Maybe he’s sleeping longer at the moment in the hope time will pass quicker. Maybe I should try it as the days are really dragging at the moment. His feed didn’t go up on Friday as somebody forgot to order enough of it the day before, but it’s such a small amount it doesn’t really matter. Josh now needs ear drops every night to help soften the remaining wax in his ears. He isn’t a fan and it take several minutes of gentle persuasion. He’s also been switched from Aciclovir to Valaciclovir, the oral version of the drug, with a view to making life easier when we go home. They’re keeping a close watch on the levels in his blood to make sure he’s absorbing it as there’s always an outside chance the VZV virus could strike again and leave him completely blind. It’s always at the back of our minds and Claire’s had quite a few nightmares about it.
Saturday brings sunshine. Apparently it’s a Bank Holiday weekend (whatever that is...) so the sudden change in the weather comes as a surprise. I only had about an hour’s sleep last night, so I’m shattered. Couldn’t stop my mind racing, thinking about what life will be like when Josh is home and how much more difficult it will be than having him here – all safe and cosseted. At the moment it’s very much a case of no news is good news. Josh is mobile enough to clamber out of bed on his own now in the middle of the night to sit on the commode, although I generally wake up when I hear the thunderous sound of him filling the bedpan. I still need to get up to wipe his bum as his wires won’t stretch to the sink or the bin and he can’t bend enough to pull his pants up. He’s come such a long way though, as this time last year he couldn’t move at all, was rarely conscious, couldn’t speak or seemingly understand us, and didn’t appear to even know who we were. He’s passing diarrhoea 9 or 10 times a day at the moment which isn’t good and finding it increasingly frustrating that it’s mostly in the wee small hours of the morning. He’s still sleeping far too much which makes it increasingly lonely in here. I often don’t get out at all during the day as there’s no school during the week and no play specialists or volunteers at weekends. I’m usually desperate for him to wake up by 2pm. He duly obliges today, but only for a couple of hours. We both manage a catnap before Dr Who and X Factor – which is running a competition where the 1st prize is to ‘Live the life of Britney Spears.’ Surprisingly this doesn’t involve shaving your head, refusing to wash your armpits or draping an albino snake over your shoulders, but results in the winner being flown to Paris in their own private jet. Josh points out that he’s flown to Italy on a private jet and it’s no big deal, although I’m willing to bet Britney has the luxury of at least one toilet on her plane...
Sunday plods along. Josh is up in time to see Man Utd crush Arsenal 8-2 but the excitement takes so much out of him he’s asleep again soon after. At home Joseph’s had a busy week with friends round, but doesn’t get out much because of the weather. Highlight of the week was Joseph asking Claire in a loud voice in the middle of TK Max if he could have some alcohol when he got home. He had a tiny sip of a Bacardi Breezer when we were in Italy and tried a thimbleful of wine at a friend’s house the other night. It’s only a matter of time before he starts hanging around outside off-licenses waving his pocket money at passers-by and asking them to buy him a bottle of cider...
Monday is Batman day, at last. Josh kept waking up all night he was so excited – although he needed the commode every hour or so anyway. His friend, Nick, arrives with Claire and Joseph around midday. Claire was so tired last night she went to bed at 7.30pm, only to be woken by Joseph’s ‘Transformers’ alarm clock at 2am. One of his friends must have set it inadvertently the other day. It’s pretty scary as Optimus Prime booms out in a loud voice that ‘Decepticons are attacking and must be destroyed’. Josh is on good form and apart from our car boot not opening for 15 minutes (which would have meant we couldn’t get his wheelchair in) our trip to the O2 went smoothly. The friends who gave us the tickets also managed to secure VIP parking for us. This means leaving your car just 2 feet away from the dome and entering via a VIP walkway which leads to a lift up to the VIP suites. Josh felt very important indeed but was a little disappointed there were no photographers lurking around outside to pap him. In the box we sip wine and beer and stuff our faces with stir-fry noodles. Very civilised. The show itself is spectacular and creatively groundbreaking, although we are quite a way from the stage. Josh’s hearing difficulties mean he misses most of the dialogue and I have to keep telling him what’s happening – even though I’m not quite sure myself half the time. Despite a technological problem involving Catwoman’s entrance that stops the show for 10 minutes ( my guess is the magnet fell off her collar and she couldn’t get through the catflap ), Batman wins through to save the day thanks to Robin who then joins him. My own dynamic duo thoroughly enjoyed themselves and after a quick photo session with all our friends, we head back to GOSH. The boys play FIFA until the sun goes down and we have to head home.
On Tuesday I look at BMX ramps online as the one I constructed is unlikely to last much longer and is killing our grass. Argos do a fantastic 4-way mini ramp set that’s out of stock in Bromley but we track one down in Orpington. While Joseph cycles, scooters and skateboards round the garden, I clear the cellar and tidy the summer house. Josh slept through until 3.30pm but had a good physio session and has been lively since. Claire’s been told that if Josh needs to come home on TPN, nobody can train us until the middle of November at the earliest. It’s ludicrous as we’ve been asking to be trained since October 2010 and been constantly reassured that they’ll do it just before we go home. The idea that we might have to hang around for another 2-3 months simply because they’re inept is totally unacceptable...
Joseph has another tennis day on Wednesday, although this one isn’t a washout and lasts the full 5 hours. Plenty of time for me to wash, iron, hoover and take a trip to the municipal dump. He’s straight out in the garden after I pick him up, cycling up and down his new ramp before conking out around 6pm and asking to go to bed. Josh is still up and about and we catch up on football transfers on the phone. It’s deadline day and it’s shaping up to be a corker. He managed to walk up and down a few steps today in physio which is fantastic news and he’s rightly proud. The haemorrhage in his good eye is smaller, but still hasn’t cleared up. They normally disappear after a week and his ophthalmologist is ready to rewrite the rule book. The JC virus is still in his blood, and presumably still in his brain. The level’s dropped again but not significantly, which is a little disappointing. Gatsro have requested an ultrasound of his abdomen to see if his bile duct is still dilated and whether it could have caused his most recent bout of pancreatitis. Josh remains a bit of a mystery, but if they hadn’t thrown his gall bladder away, they might have some answers by now...
It’s Thursday and I’m writing today’s entry in advance as I’m off to an old ad agency reunion tonight. Joseph’s staying at my brother’s house and I’ll hopefully stagger home late, but relatively sober - given that I need to be up at GOSH early tomorrow. Claire suggested I stay up in London under the misconception that Premier Inns are £29 a night. Unfortunately there’s nothing under £99 unless I’m willing to share a room with Lenny Henry. For £9.99 I can have a mattress on the floor of an 11 bed dormitory at the YMCA. If it was the YWCA I might have given it a bit of thought...
