Sunshine and picnics

We've just had a great weekend with Richard and his family staying with us for a few days.

Their twin boys are the same age as Fin, and their older son and daughter kept Fin entertained in the garden for the whole weekend. Ross got lots of attention from Richard's wife and did his usual 'I'll pretend I'm no bother' behaviour when we have people to stay. He was full of smiles and only cried when he got his medecine. He even slept pretty well! I reckon he does it so everyone thinks we're nuts when he say he cries loads or doesn't sleep...

Did a 5 mile run with Rich on Saturday to compare our fitness levels - it's strange how even though we're the same height his legs seem so much longer and therefore faster than mine. We then proceeded to undo any fitness gained by having a very long lunch in the sunshine in the garden all afternoon.

We also collected the keys to our new house at the weekend and went there for a picnic in the garden on Sunday. We're planning on moving during the week after Easter; it'll be good to get into our own place at last.

Ross has had visits from the speech and language therapist and has been seeing other therapists each Wednesday morning. Last week he giggled when presented with a little vibrating toy, and we've noticed he's started moving his head in order to follow lights with his eyes. All little positive signs which mean so much.

We're off to Scotland for Easter in a few days - hope you al have a great Easter break.

I'll leave you with this image taken on the final ridge to the summit of Mont Blanc - we're hoping for weather like that...

Did I mention Ireland won the Grand Slam?

Apart from some smiles once or twice a day, Ross has been a lot more agitated in the past week or so than he has been. Lots of crying, sleeping not so well during the night and not eating as well as he has been. He has had a pretty bad cough which we thought might go into his chest again so we've been keeping a close eye on it, but it doesn't seem to be getting any worse. Hopefully he'll get back to himself in the coming days.

I have been hacking-up bits of lung for the past 5 days so training has been put on hold - even climbing the stairs has been knackering me. Hope I can shake it before this weekend as Rich and his wife and 4 kids are coming to stay this weekend and I'll need all my energy... Also it's only 10 weeks till we head to Mont Blanc so I need to ramp-up my training quite a bit (have I said that before???)

We've exchanged contracts on our new house and hope to move in just after Easter so once we get settled there we'll think about when to start weaning Ross off the steroids as the doctors think he's already been on them too long - can't really face it though given the risk of the seizures returning. We've also got appointments for an EEG, and with some eye and ear specialists in the coming weeks so I'll let you know how they go.

My brother Ian received a cheque for £500 from Donaghadee Young Farmers Club at the weekend, money they had raised at a BBQ last year for the NSE for Ross. I had no idea they were even raising money but it's very touching that people who have never even met Ross are inspired to raise money to help. Thank you very much to everyone who was involved in that.

It's April Fool's Day today, but for some reason I don't feel like partaking like I did in previous years...

Mont Blanc from a distance...

We had a great week away skiing last week in Les Gets in the French Alps. Clair and I only skied half days whilst the other was with Ross, but the snow was great and we ony saw a few clouds all week - perfect conditions.

Fin enjoyed ski school and had no problems getting pulled uphill on the rope or skiing down the slope - it's a good job we were only there for a week or he'd have ended up better (although not faster...) than me. Ross enjoyed the attention and it was great spending a full week with him again, despite the nights on the sofa.

Mont Blanc was ever present on the horizon - it does look big...

We were there with our good friends and their kids. If there was one thing that made the week difficult, it was seeing their kids, who are just weeks older than Ross, toddling around, laughing and throwing food around. How we wish Ross had been able to join in, although that's the situation and we have to live with it, no matter how difficult.

Ross does bring us lots of joy too. Like most blokes, as long as he's had a decent feed and a good sleep, he's content. And he loves his baths, especially with Fin.

Planes, no trains but automobiles.

We reckon we're doing pretty well in keeping things as normal as possible. Last weekend we drove to Scotland and even managed to leave the boys with their Grandma and Grandpa for 2 whole nights while we went our or friends' wedding. And this weekend we're heading off skiing!

Last weekend was great, if tiring, but Fin and Ross seemed to enjoy the additional attention, and they got to meet their newest cousin Thomas.


This Sunday we head to Les Getz for a week's skiing with some friends. I'm not sure how much skiing we'll get done but it will be great to spend a week with family and friends. Taking my hiking boots so may get Ross in the backpack and do some altitude training.

Rich and I have got our flights to Geneva booked for our attempt of Mont Blanc. We'll be there the middle weekend in June and are just hoping for good weather, but at least it's early enough in the summer to allow us to try again later on if we don't make it that weekend. Need to step-up the fitness training though as that will come round very quickly.

Just been watching some of Comic Relief (it's 2.30am and Ross and I have nothing else to do...) and 23 things stood ot for me;
- so far they've raised over £57million, an amazing total which will help countless people at home and abroad
- great to see those pampered celebs getting themselves up Mount Kilimanjaro, although they seemed to have had a rather large support crew. I hope Rich and I can support each other enough on Mont Blanc. At least we won't have to listen to Gary Barlow the whole way up.
- watching any clips with sick kids in them was so much harder this year this before...

Giggles. Yes, giggles!!!

So last week was a bit nuts.

The tragic death of David Cameron's son Ivan who suffered from Otahara Syndrome, something not a million miles from what Ross has, really knocked me for six. He died following 6 very difficult years, seizures cruelly wracking his body and mind on a frequent basis. The similarities with Ross's condition are there, but one big difference is that Ross's seizures are under control, and have been for 8 months now. We didn't really appreciate before why the excellent doctors in Paris were so obsessed with getting his seizures under control, but there it is.

Ross will have to come off the steroids he's on at some point asthe side effects aren't great. They have made the difference in controlling his seizures whilst the anti-epilepsy drugs only reduced them, but did not eliminate them. We're hoping and praying that when he is weaned off them (we'll maybe find out when the doctors here want to do that when we see his new paediatrician on Wednesday), the seizures don't return...

Whilst my thought's last week were dominated by that, we also had opportunity to take immense pleasure from experiencing Ross giggling (something else we were led to believe may never happen). It's more a kind of 'gooo' but combined with his infectious smile, it's definitely a giggle. As long as he's had a decent sleep, some food and isn't struggling to fill his nappy...he's now pretty much smiling on demand. He's responding to tickles (back, front, sides, chin, pretty normal places really), voices and more than ever Fin's doting attention.

Tonight Ross and Fin's daily 'swim-for-kisses' session in the bath resulted in giggles. Great for Clair, me and also for Fin.

Fin started pre-school today and didn't shed a single tear - a major step forward for the wee man who's endured a massive amount of change in past months. To be honest, if he turns it on for the teacher like he does for us, he'll have them all educated in no time.

I have to mention David, Rory and Kerry, who are all well progressed in their marathon training, some perhaps more than others... They are all running the London Marathon this April in order to raise money for NSE - have a look at their websites and please support them if you can - http://www.justgiving.com/runforross - http://www.justgiving.com/kerrycrawford - http://www.justgiving.com/rorymcmillan

Ross has finally managed to get over the cough which has been bugging him since Christmas. He's been in much better form the past few weeks and enjoyed a visit from his Gran & Grandad a few weekends ago.

His sleeping is still a little erratic but is hopefully heading in the right direction. He's also eating ok and knows what tastes he likes and what he doesn't - another little something that we never thought he'd be able to do.

With physio starting this week, and first visit to the paediatrician early March things are starting to happen following our trip to Great Ormond Street. Good timing as our stash of medication we brought from France is rapidly coming to an end and we need to get the UK supply sorted.

We enjoyed Valetines Day with a day out to Polesden Lacey National Trust property where there was a chocolate festival. Fin first of all covered his face with chocolate from the chocolate fountain and then got his face painted before scaring all old ladies within roaring distance.

Our only other news for now is that we've had an offer accepted on a house in Bookham. Hopefully it will all go through quite quickly and we'll be in our own house in April!

Let it snow...

After being knee deep in snow last weekend in Glencoe, it felt very bizarre this week being knee deep in snow in our own backyard in sunny Surrey. But snow there was and lots of it. Ross was very pleased...

We didn't quite know how deep it was so we sent Fin out to see if he disappeared or not. There was lots; I scraped 15 inch deep snow off the car roof and nearly did myself in tryng to dig a path to get the car out.

Oxshott took on a ski-resort feel and with no-one able to get to work (and I assume suffering the same remote-access IT issues as me) everyone was out and about, stopping to say hello, snowballs in hand or sledges in tow. I must admit that it did cheer me up no end.

Fin had a ball in the snow, and didn't complain of the cold once, despite eating at least 2 tonnes of the stuff (white only - took the opportunity to educate him on the dangers of yellow snow...).

We had our first full consultation at Great Ormond Street Hospital a few days ago. We didn't go expecting to get any answers which was a good job; I think it's becoming clearer and clearer that we're not doing to get any answers and it's just going to be a case of waiting and see how Ross is from one day to the next. At least the medication regime will be clarified, test results followed up and all the right referrals are happening.

Now we just need more snow...