Well - the weather’s been quite reasonable, so when Don asked if I’d like to go up to Silverstone GP circuit on the 7th Feb for a Gold Track trackday I was well up for it.
We had a brilliant day - the 850 performed brilliantly. I had a fuel pump failure at lunchtime, but a quick trip to GP Racewear courtesy of one of the Silverstone tutors and I was back in action for the next session.
I’m looking forward to the next one now!
Arse.
Not been too good at keeping a blog really. Or even updating the website. There is stuff going back almost a year which hasn’t been updated either in the main site or in the blog - so while I’m sat here watching server updates occur at half-midnight, I thought I’d get myself up to date a bit.
Firstly - Alex.
Alex has had a bumpy year, but for the most part is doing very well indeed. He has a few issues at the moment with some breakthough seizure activity but other than that his SWS is very well managed and we’re keeping him out of hospital for the most part. He’s just starting to cruise round the furnature - look out world, walking isn’t far off!
He’s made lots of friends, both in and out of Hospital and continues to be the centre of attention wherever he goes. We just took our first family holiday with him to Centre Parks and it was lovely - he really enjoyed the water and we are going to get him swimming lessons as soon as we can.
Second - Pets
Sadly - we lost Sid the Rat. He had cancer, which does affect many rats unfortunately. He was very well cared for by “Companion Care” Vets in woking - Ivor and his team did a tremendous job but he was overcome by his illness and died.
Floyd, his buddy was very upset at the loss of his companion, and we decided that the kindest thing to do was get him some more friends to keep him company. The general advice amongst rat people is to get 2 babies to introduce to an older rat, so that they do not get bullied. As it happens we found a litter of 3 who needed a home and decided that to split them up would not be good, so Clarkson, Hammond and May came home with us and have been adopted by Floyd.
Third - Work
… continues as normal really. 2007 was a busy year with a lot of high profile work, a new permanent install at the Royal Albert Hall and some major in-house projects too.
I’m currently doing a series of server upgrades for the SBD in-house network, as well as building two PC-Recorders for use in the field on shows.
Lastly - the 850! :o)
Having had very little time the car has seen very little action. Marco @ MTE did me a new ECU which has found more power and more low down torque… I’ve also fitted a IPD uprated rear anti-roll bar for better turn in - we’ll see how it goes.
I’m planning to go testing with the car soon - I’ll update the blog and the site when I have some more to report.
In the meantime - hope this makes reasonable reading - and sorry that its taken so long.
More soon - promise.
Phil :o)
Sad to report that Rolo - the hamster of the family - has passed away this week aged 20 months. He seems to have hurt his neck somehow and was struggling to walk, so we took him to the vet, who thought he might be able to recover, but he died the same day. Fortunately he had pain relief from the vet, so we’re confident he was not in any distress at the end.
Rest in Peace Rolo - with all our love - Phil, Emma & Alex.
Well - I blinked again and another 6 weeks has gone past.. So much for me being able to keep the site more up to date by blogging instead of having to author HTML! I don’t know how people find time to keep a diary or a blog every day - unless their days are longer than mine, which would make sense because mine are never long enough.
Alex is doing OK since we got home. He’s been back in hospital a couple times in the six weeks or so since we left - but only for a day or two at a time. We’ve discovered that any minor virus or childhood illness which causes a fever means that we lose seizure control for a couple of days, and its safer to have him monitored in Hascombe ward.
Other than that he’s being a very happy little chap - Physio is going well, and he’s trying to stand (with assistance) and finds it hilarious! We took him to his first Prom concert last weekend - which he loved. The Blue Peter Prom is a matinee concert specially adapted for children and as such we thought it would provide an ideal first concert experience. From the first notes of Copland’s “Fanfare for the Common Man” he was wide eyed and lasted until the interval listening intently and looking around the hall at all the bright lights - courtesy of the main man Bernie Davis! Second half he got a bit tired and slept through all the loudest bits! Like father like son…… ;o)
Work wise everything is going well - we’ve just completed a new permanent install at London’s Royal Albert Hall - which replaces the system we’ve had in there for nearly 10 years. The new system has been debuting on BBC Proms, and everyone who has used it or heard it has commented about how good it is.
And Finally - team Kalmar Union made it to Castle Coombe a fortnight ago - Piers and Don drove two good races, and despite a penalty for leaving the pits 1sec too early on a pit-stop, we scored well overall. It was a good day, and we’re looking forward to Donnington and Brands Hatch in the coming month.
Hooray!
Alex was discharged from hospital on Sunday, exactly 1 month after he was admitted. We’re very very pleased to be home and it is absolutely brilliant to be able to spend time as a family again.
We’re all so grateful to the staff of the Royal Surrey County Hospital, the Everlina Children’s Hospital, Great Ormond St Hospital and everyone else in the community who has helped Alex get his seizures under control so that we can have him at home with us again.
The next appointment we have is with Mr.Morrison up at St.Thomas’ to take a look at Alex’s Glaucoma, and then after that we have a neuro-surgical appointment at GOSH to discuss possible future options for the management of Alex’s Sturge-Weber syndrome.
If you’d like more information on Sturge-Weber syndrome, you can find it at http://www.sturge-weber.com
Alex is very very happy to be home - as you can see :o)
It’s been a while again - I know, but trust me we’ve been busy!
Further to my last post, Alex’s seizures didn’t get under control and on Friday 27th April we were transported to London’s Evelina Childrens’ Hospital @ St.Thomas’. I say we…. Alex and Emma were, I was left at RSCH because I had contacted Novovirus there, and spent the weekend throwing up at home, being cared for by my dad who was awesome!
Once I was fit (wednesday) I travelled to London to join Emma and Alex, who was by then under the expert care of Dr Ruth Williams, a consultant Neurologist at Evelina. She works very closely with the team at GOS, and in consultation with them adjusted Alex’s medication from that which we had been trying originally.
It seems to be working, and as of yesterday, Alex is virtually seizure free. He has some small partial seizures lasting a few seconds, but they are all self resolving, and he has required no emergency treatment since shortly after he arrived here. He did have a few episodes of Apnoea (where he forgot to breath and turned blue) but those were associated with generalised seizures which we now have under control.
It has been made slightly easier for Emma and I in the last few days since we now have a room at the Ronald McDonald House. For those of you who don’t know the RM foundation provide rooms for families of sick children in hospital away from home. It has been a life-line and I would urge anyone who doesn’t put change in the boxes at a McDonalds restaurant to do so - it really does make a huge difference when you have a child in hospital.
We learned today that we are going to be transferred on Tuesday of next week to the fast-track assesment unit of the Sturge-Weber clinic at Gt Ormond St for an evaluation by their people, before hopefully being transferred back to Guildford to manage his ongoing care at RSCH which will be a blessing from a logistics point of view.
So there we are - thats kind of the update really - as soon as theres any more to tell I will post up more. I’d like to thank all the staff up here, who have been amazing! Especially Becx & Mills who Alex has a real crush on! Also - thanks to all of our family and friends who’ve visited and sent so many lovely gifts and balloons which Alex really loves.
Here are some Photos from our stay so far… (click to enlarge)
Phil :o)
Well,
Its now Friday and we’re still at RSCH. The staff are doing an excellent job of looking after Emma and I aswell as Alex.
He’s still having seizures, and we are trying several different medications to keep them under control, but at the moment he’s tending to have them whenever he wakes from a long sleep. Because he’s so tired from the fits, he’s sleeping a lot so we’re now feeding him through a tube, just to make sure he doesn’t get dehydrated or anything.
The weekend will be the decider, if he becomes stable, we will be allowed to take him home. If we can’t get on top of the seizures here, then we’ll have to transfer to Gt Ormond St hospital and see what they can do to help…
I’ll let you know more when we do.
Phil 
Crikey,
My last post of the race vids seems like yesterday, and it was in fact 25 days ago… This has been a really busy few weeks.
Firstly, and most importantly, Alex has been in hospital. He has Sturge Weber Syndrome as a result of his Port Wine Birth Mark, and a complication of that is epilepsy. Alex had his first fit last weekend and is currently being very well looked after by the excellent staff at the Royal Surrey County Hospital. Once he has been fit free for 48 hours we can take him home, so I suspect you’ll next hear from me when that happens. Emma is living there at the moment and I come and go as much as I can while keeping everything else together.. They have great parents facilities on site and we have both felt really well looked after too!
Other than that (which has really dominated the last few days) its just been really busy with lots of people coming to visit Alex, and lots of work - with a particularly long run at the Royal Albert Hall.
I’m looking forward to getting Alex home and for us to be able to enjoy some family time.
Phil :o)
Here it is folks - the videos you’ve all been waiting for! These are all from the March race meet at Silverstone.
Click on the links to watch each clip, or right-click to download.
www.t5r.org/videos/track1.wmv (13Mb)
www.t5r.org/videos/track2.wmv (6.5Mb)
www.t5r.org/videos/garage.wmv (9Mb)
www.t5r.org/videos/pitstop.wmv (5Mb)
www.t5r.org/videos/pitwall.wmv (1Mb)
Phil
Sorry to those of you who waited so long for the EERC results…. It’s been manic here!
I found myself heading up a large corporate job for Quintessentially Events at London’s Guildhall. The “Diner Des Tsars” featured a host of stars raising money for UNICEF and took a day and a half to build! The event went well and I hope raised lots of money for the charity. You may have seen some pictures in the press, but here’s how the evening looked from where I was standing….
After that job was done, I was back in the office on Friday, making sure that my ongoing programme of IT maintenance kept catching up from when I was away on Paternity leave with Alex. All seems to be going well, and I even managed to sort out some Outlook issues which had been plaguing Sarah for a while, so everyone’s a winner!
Emma’s Sister, Nicola has come to visit from Canada, and we’ve had some family time today (Saturday) before she flies home. Alex has been very pleased to finally meet Aunty Nicola, who seems equally delighted to meet her first Nephew.
Well - thats it for now, I’m up to date I think….. I’m planning a quiet weekend involving only investigating an electrical fault somewhere in the outside lights which makes the breaker pop, and replacing the bleed nipples on the AP racing brakes on the 850 which have seized. Alex and Syd and Floyd are now asleep - which is why I’m able to blog - and Rolo is trundling round gathering food - all is calm at last in the Wright household.
Until the next….. :o)