It's been a while, again...

It's been a very long time since I've managed to find the time and the energy to write an update. I can't believe it's already September and Ross is almost 28 months old. We've just spent 2 weeks in southern France staying at the same villa we were at last year.

Ross was in the pool everyday and seemed to love it, and he genuinely seemed to chill out and become very relaxed, which may have had something to do with the fact that he wasn't being rushed about from one appointment and therapy session to the next. His legs and arms are also really brown and his hair really blonde...but then it was pretty ot every day, the thermometer nudging 49 degrees one day!

And Fin had a great time too!

We had a week in Cornwall back in June where Fin and Ross both enjoyed some British beaches and waves. We had great weather then too although not as warm as in France.
The Lizard Penisula is a fantastic place to go with with kids and Kynance Cove is one of the most beautiful beaches I've ever seen.

Ross still needs constant attention, but his sleeping has been much better in the past few months in that he is normally only up for 1 or 2 nights a week, rather than almost everynight. Most nights now he may not go to sleep till about 10pm, and he may wake at 5 or 6am, but that’s better than being up for a few hours in the middle of the night. He’s also eating 2 solid (or rather pureed) meals per day which along with no steroids must help the sleep situation.

We finally got Ross off the steroids after many months of reducing his dosage from 40mg per day to zero in increments of 1mg per day. At that point he was also able to stop taking the multivitamins and calcium he was on, so now he in still taking the 2 anti-epilepsy drugs, 1 to settle his stomach and 1 to help his bowel movements, which need to average 1 a day or Ross becomes really grumpy.

11^th May was Ross’s second birthday and to be honest neither Clair nor I really enjoyed it. A second birthday should be lots of noisy kids running around, playing with each other and their siblings. Ross’s wasn’t like that. We did get him a funky swing called a Swung from a special needs website (which basically means they can charge twice the price as normal stuff) which Ross can sit on 1 seat and Fin can make him swing by swinging on the other seat.

Ross turning 2 also means that we have to pay full price for his flight tickets and he must sit in his own seat. We did have a good argument with Easyjet the first flight we took after his birthday as our logic, considering that fact that Ross can’t sit, and that he was the same size as a few weeks earlier before he was 2, was that he should still be allowed to sit on our knees. After about half an hour of the stewardess’s reading manuals that looked like hadn’t been used for years, the pilot on the phone to Easyjet and them on the phone with their insurance company, the result was a “sorry Sir, but he’ll have to sit on his own seat, and if he can’t be restrained properly there you won’t be allowed to travel”. Thanks Easyjet. So since then Ross has done 6 flights sitting in his one seat, slumped over against some padding on the armrest in what looks like a very uncomfortable position. He has been a wee angel though and thankfully has either sat quietly or slept during most of the flights.

Ross has had some great medical experiences lately. The lady who came to the house with some music for Ross to listen to on tape cassettes has obviously not noticed that the only place to get a cassette player these days is to buy a Ford Escort on eBay. Reminded me of a friend who had a visit from someone from the wheelchair service, who was in a wheelchair, and as their house was not exactly user friendly the meeting had to take place in the front garden. In the past few months he has had a general anaesthetic to check his hearing by having ABR (audio evoked brain response) as he failed the initial test completely. We were pretty sure there was nothing wrong with his hearing, but it’s a shame he had to go through another general anaesthetic to confirm it. Ross’s eyesight has also been checked via a test where he was wired up to monitor his brain activity and then shown a series of images. This showed that his eyes themselves work (apart from the prescription glasses he has worn for over 18 months now) but it is the lack of ability of his brain to interpret the signals it is getting via the optic nerve which means his eyesight is very poor. Unless you are down close in front of his face, he will not recognise anything, and in recent months he does seem to have been recognising at least his parents and Fin like that.

We did get Ross’s blue badge to allow us to use disabled parking spaces which will be abig help for Clair when she is out with the boys. We did resist the temptation to go parking on random double yellow lines just for the sake of it when we got it through though.

Ross starts Brooklands special needs school in Reigate next week. He’ll be going 2 mornings a week and continuing at Dame Vera Lynn School for Parents for another morning each week. We’ve no idea how it’ll work out with us leaving Ross at school and with Fin starting reception class at his new school in a few weeks too.

But probably the best news in the past months has been Ross’s giggling. Other kids in his therapty classes may have started rolling over, or choosing toys, or saying words, but Ross has managed to giggle a few times (under specific conditions including having had lots of sleep, a full tummy, no need for a poo and some intense tickling). And that is a major milestone for him...

4 hours and 57 minutes of pain...

This year has been absolutely manic and time seems to be flying by! For me a good chunk of it has been taken up by a combination of a new job and marathon training. For Clair, it's been endless appointments at various hospitals among other things.

Ross continues to grow physically, and is making little bits of progress. Fin is still our wee start, never ceasing to amaze us with his intellectual prowess; counting, reading, writing, creativity with fibbing and negotiation skills my colleagues in Sales would kill for.

The marathon was a great day. I must admit my training was limited to single long runs at the weekends as I really struggled to find time during the week. This meant I was probably not as prepared as I should have been but I'd worked up to and managed 4 runs between 15 and 20 miles before marathon day. Each of these left me with a very painful right knee and concerns about being able to do 26 miles. It also required pretty much a full half day every weekend so Clair had to take the brunt there too as I disappeared off leaving her with the kids. The physio treated my knee in the few weeks before the marathon, working on my knee, then my ankle and eventually my bum! Thankfully she discovered the week before the marathon that sticking acupuncture-type needles into the muscles in my right buttock released the tension down to my knee, and somehow this meant that during the marathon my knee was pretty sore, but nowhere near as bad as I thought it would be.

I think the rest of Team Ross were slightly better prepared, although Bungee had 2 weeks on conference centre diet, and Ross had a very painful hamstring to contend with. Potters, Graham and Sophy were probably the best prepared, but we were all equally motivated by Ross and by the huge amounts of money people had been sponsoring us. The total raised, split equally between The NSE and The Children’s Trust is over £28,000. Thanks everyone!!!

We met in Greenwich Park near the start line on the morning of the race, put our bags on the waiting lorries and joined the thousands of other runners in the cold drizzle waiting for start-time. Everyone was pretty quiet and if anything like me a little apprehensive about the coming hours. We were probably about halfway back in the main start group but even though we were in the midst of over 35,000 people the organisation at the start area was so good that we were over the start line within 6 minutes of the official start-time. Bungee and Ross went on ahead from the start and the Crudens, Potters and I started together through the streets of east London, although we did lose Sophy at the first toilet opportunity. The three of us stuck together doing 10 minute miles for the first half of the race, overtaking Richard Branson who was doing his best to keep a low profile, and taking in the atmosphere - the locals around the east end really do make the race a pleasure for the runners. The little brass bands, the massive house parties (including the house as a pirate ship complete with 50 Captain Jack Sparrows), the sign saying "Run like you've nicked something", and the music at the various pubs all kept our minds off the miles and the first half was relatively easy. Also, seeing our family and friends about 11 miles in was fantastic and pretty emotional for me. I saw Clair as we were approaching and despite shouting at the top of my voice for him, I was already past Fin before he saw me, but he did, so I could carry on without stopping.

I then started to feel my knee and the first pangs of hunger! Breakfast was starting to feel like a long time ago and the gels weren't even hitting the sides of my stomach. Going over Tower Bridge I started to slow up and Graham had already gone ahead a little. i could tell I was holding Potters back so I told the big man to go on ahead and then I was on my own (apart from the thousands of other runners and crowd, but you know what I mean. By the time I got to the gel station at 14 miles I was in bits, so I stopped there and had a few gels. i then saw people in the crowd with chunks of bananas, others with slices of orange and others with Jelly Babies. So I pretty much stopped and had my lunch, which after washing down with a bottle of water I headed off again pretty slowly. I was then overtaken by Stu from work, dressed as a 6 foot Cornetto, and between the indignity of that and the calories from my impromptu picnic starting to kick in I managed to get back up to speed.

The route round Canary Wharf seems to go round in circles but eventually you come out into bright sunshine and huge crowds, many cheering the names we all had on the front of our shirts. They do make a difference in doing this but still, as you go on, the miles just seem to get longer and longer... By about mile 22 I was starting to slow again but then I started to hear the crowd shouting "Go Richard". There was no way I was going to let Mr Branson beat so I managed to pick it up again and headed down the embankment, struggling but moving. Saw some friends during the second half also, and some of the boys in Westminster Square. Heading up towards Buckingham Palace they have markers saying 800m, 600m, 400m and 200m to go, and these must be the longest 200m distances ever. I was burst by this stage but knee that when I rounded the corner Clair, the boys and our parents would be in the grandstand there. I rounded the corner and saw them straight away, just before finishing in a time of 4h 57m 21s. As Rich put it when we made it to the top of Mont Blanc, "it was emotional".

I crossed the line, collected my stuff, managed to find Clair in the chaos that is the meeting point, and met up with the rest of team Ross, all of whom had finished ahead of me, including Sophy who we'd left at the loo 1 mile in. Everyone was pretty buzzing with what we'd achieved and following a quick photo opportunity with Ross, we headed off for a few well earned beers.

Great to have done it, and to have raised so much money, but please never, ever let me consider doing the marathon again...

And a pic from Ross's Christening last December.

It's been a while...

Sorry I haven't written for a while. It has been pretty manic recently; I'm in the process of changing jobs (still with Unilever but a permanent job and one which doesn't require moving house for the 6th time in 9 years...) which means I'm still doing 2 jobs a while and the endless stream of appointments Clair has with Ross continues.

Since I wrote last we've been for a weekend up north, Clair and the boys staying with our friends the Chapmans in Nottingham, while Rich and I headed to Snowdonia for some mountain madness. Apparently I'm more like an intermediate rather than a beginner now (I think as I have completed a climbing move after removing one boot in order to get a foothold)! Fin had a ball with the twins that weekend as always.

Clair then took the boys to Scotland for a few days over Fin's half-term and to go to his cousin Tom's first birthday party. The journey was really difficult for Clair with the flight leaving about 6 hours late, and only made worse by Easyjst managing to lose Ross's special-needs corner seat during the flight. The way they have managed to be consistently unhelpful in trying to find it has been very impressive, if extremely frustrating. I've given up on them ever finding it now and have ordered a replacement; that's one way to discover how disgracefully expensive equipment for special needs kids is!!!

Clair also took Ross to see an ear-expert who cheered us up no end by telling her that Ross was deaf and would need to be admitted for an operation during which they will fit him for 2 hearing aids. His hearing was the one sense we thought seemed to be working pretty well so that was a real shock.

The marathon training is a real struggle. I haven't been very successful in getting many runs in durng the week but have managed runs of 11-12 miles the past few weekends. Pretty hard work and the knees are pretty wrecked after each one. It'll be alright on the day I'm sure.

Thanks to a cold and an eye infection, we had just about the worst night's sleep ever last night. Ross woke about 11pm just as we were going to bed so I stayed up with him until about 1am at which point I had to go to bed as I had to get up at 5.30. Clair was then up with Ross until 3am, and wasn't long asleep when he woke again at 4am. He was still awake when I left.

Think we need a break. But good news is my parents are arriving on Thursday and we're taking the opportunity to head away to the Cotswolds for one night. Looking forward to it!

2 bits of good news;
- we should be getting 3 hours per week respite help from a charity called Crossroads (this is fantastic news as we were getting no's everywhere we asked)
- we should be heading to the south of France with the Chapmans again this summer at some point. Can't wait...

If you fancy a good read (and an insight into what life's like with a son like Ross) buy a book called Blue Sky July by Nia Wyn. I'm about half-way through and it's scarily similar to our story!

The Burns Supper

Last Saturday we travelled up to Edinburgh to go to our Burns Supper, organised by us 5 runners to raise money towards our London Marathon fundraising. It'd taken a lot organising but with all tickets sold and some great prizes volunteered by friends, but it all came together on the night.

A lot better than our journey up after the alarm failed to go off. We didn't know it was possible to be inside security in the airport less than an hour after waking up, but it is... My parents were over and we were leaving them looking after the boys overnight - a very welcome break.

The evening started with a welcome and straight into addressing the haggis, delivered flawlessly by Jonny. The meal was great and then Ross, Graham and Jenni all did great in the toasts. After a bit of Scottish dancing and the raffle, came the highlight of the evening. We had some great stuff to put in the auction and Potters has found his true calling in life as an auctioneer. We had husbands and wives bidding against each other, guys who'd agreed to club together to buy the golf together bidding against each other, and one guy was even seen bidding against himself... Most amusing and in the process raising much more money than we'd expected with a total of about £9000 which we're splitting between The National Society for Epilepsy and The Childrens Trust.

The training's been on hold for a few days but managed to get out for a run today. I'm going to try and do a longer run over the weekend so we'll see how that goes.

Ross is down to 10% of the original dose of the steroids and should be off them completely by the end of February. Hopefully the seizures stay under control. I must get some recent photos on here so you can see how he's doing...

The big freeze...

So the trip to St George's in Tooting to see the consultant about Ross's MRI results went pretty much as expected - not much new info, no breakthrough diagnosis and certainly no simple problem which can be corrected easily... Ross has 2 areas of his brain which show "immaturity", which aren't as developed as you would expect to see in a normal 19 month old. This explains his severe developmental delay.

Will Ross develop much in the future? "It's hard to say. Probably as much as he has been." Not much then.

Will Ross's brain ever develop to an extent that he could develop to a level that of his peers? "Hard to say. Probably not." Right.

He did seem very please about the fact that Ross has been seizure-free since July 2008, using the word "miraculous" twice"! I guess we should be grateful for some things...

He recommended that we continue the therapies and exercise Ross is currently getting from Clair and his Occupational Therapist, Physiotherapist etc, and continue to wean Ross off the steroids. He's down to 8mg/day now reducing by 1mg every week, so by the end of February he'll be pretty much off them. Assuming Ross remains seizure-free (keep everything crossed please) the next thing would be to try to wean him off Vigabatrin, one of the anti-epilepsy drugs Ross is also on, as it can cause problems with peripheral vision. We're not sure Ross can see very much anyway, but still the more we can get his medication reduced (without the seizure coming back!) the better as he hates getting it...

We haven't yet had much success in doing what we promised ourselves to do at the start of 2010 - to get some respite care to stop us going mad, and to find a cleaner so Clair doesn't have to be waste precious time when Ross is sleeping cleaning the house! Chase hospice based in Guildford are coming to see Clair and Ross at the house one of these days so hopefully they see the need for a few hours sanity-time each week. We've given up on getting full night's sleep but if nothing else hopefully they can do something to allow us to dedicate a bit of time to Fin, who does lose out as Ross requires so much attention.

Whilst the snow has been a welcome distraction and meant I worked from home a few days and was therefore able to help a little, it has also meant that all Ross's normal therapy sessions have been cancelled. Glad the thaw has arrived as Clair was getting a bit stir crazy, although it didn't come in time to allow Ross to attend his first day at the Dame Vera Lynn School for Parents (http://www.dvltrust.org.uk/school-for-parents.html), and he missed his session in the pool at a local special-needs school. It also put a stop to my marathon training - if it continues much longer I'll have to ask them to postpone the marathon...

Snow-bound airports and baggage-handler strikes aside, Clair and I should be off for a treat next weekend. My parents arrive to look after the boys and we're heading to Edinburgh for a night to attend our charity Burns Supper which I've organised with my fellow "Running for Ross" marathon runners. Should be a chance for us to have some "us" time, to see lots of friends and to have a great shindig! I'll let you know how it goes...

Christmas 2009

So Santa did find us despite our travels aroun the UK. We managed to avoid most of the snow and ice related road chaos but still the travel was a bit of a pain. I managed to get out for a few runs during the holidays but the scales tell me that it fell way short of what was required to counteract the excess chocolate and cake... Need to get my act together - only 14 weeks to marathon day!

Fin had a really great Christmas, got loads of presents and loved playing with his cousins, and Ross had a few times when he was clearly enjoying the noise of having other kids playing around him.

We're off tosee the neurologist tomorrow to see if Ross's MRI scan before Christmas showed anything. In the meantime, here are some photos from the past few weeks.

Christmas is coming...

We had a great time last weekend with both sides of the family at our's for Ross's Christening. The service was just right, and there was also a collection of toys and gifts for the Church to donate to the Children's Trust, which was very appropriate. We had 15 bodies sleeping in our house last Saturday, and even more for lunch on Sunday. Ross was on good form, smiled up at the minister despite getting cold water poured over his head and then slept while we had lunch. Fin had a ball with the Chapman clan... Needless to say we were all pretty knackered by Sunday evening. The National Society for Epilepsy had a lunch this week to thank people who had raised funds to support them during the year. I went along and was pretty emotional receiving a little card and their thanks for the money raised on behalf of Ross during the year. They're very fond of Ross there, and are amazed how much he's always smiling in the photos, but then we tend not to take too many pics when he's screeching... They mentioned my Mont Blanc ascent, the 3 marathon runners Rory, Kerry and David, and William and his kite-surfing buddies. During the year together we raised over £25,000 for the NSE. I'd like to pass on their thanks to everyone who helped in any way, from donations to supporting any of us who tried to raise money.

Given that Ross is still up for 2-3 hours every night (Clair does most of it during the week and I tend to do weekends) we're both feeling pretty knackered, and we'd been holding out for some respite support from social services. We know that most babies are up most nights, but that generally ends after about 6 months. But in the past 19 months you can count the number of nights Ross has slept through on one hand, and there's no end in sight. Plus unlike most toddlers he needs constant attention and can't be left to occupy himself, or plonked in front of CBeebies, even for a few minutes. The health visitor had submitted our case and we'd been led to believe it would be a bit of a formality to get at least a few hours respite support each week. This is especially important for Clair's sanity, just to give her a chance to get some time for herself. Anyway, we got word during the week that the panel which decides who gets and who doesn't opened our case and then closed it straight away. Apparently as neither of the boys are at risk of abuse we don't qualify! We will be challenging the decision..
So Christmas is less than 2 weeks away. It'll be a bit mixed for us again this year with Fin well aware of the whole Santa thing and excitment building, but also Ross won't be able to enjoy it anywhere as much as he should be able to. People have been asking what they could get him and we'd love to be able to say the same as most other parents of toddlers would... We're heading up to Scotland for a few days before going across to Northern Ireland for Christmas at my parent's. We're taking the car as we need to take Ross's seat as he needs to be in it everyday for a while. Hopefully it'll be a good break despite the travelling.

Went for a 5 mile run yesterday and was struggling for breath; think I'll need to get a few new inhalers if I'm going to be able to do the training I'll need to to survive the marathon!!!