Tuesday, 31 March 2009

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...

Friday, 27 March 2009

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.

Friday, 13 March 2009

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...

Monday, 2 March 2009

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