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!!!

Running for Ross

We're off to a good start on the sponsorship for the 2010 London Marathon, with some very generous donations quickly moving us towards our targets. Thanks especially to my Auntie Kathleen who raised over £1400 in a charity cinema evening in Northern Ireland.


Plans are also well underway for our charity Burns Supper which will be held in Duddingston Golf Club in Edinburgh on 23rd January. Not many tickets left and we're gathering up some great stuff for raffle prizes and the auction. Should be a good shindig...

The marathon training, on the other hand, doesn't seem to be going so well for me, but I suspect I'm not the only one. It looks like we'll be having to make some quick progress post Christmas!!!

With Fin in the house, things are really gearing up for Christmas this year, whereas in previous years it just sort of happened to him. I'm not expecting much sleep on Christmas Eve if his anticipation of Santa continues to grow.

And Ross is slowly but surely coming off his steroids medication. He's now down to 13mg per day (started at 40mg and we're reducing by 1mg per week) and so far so good in that there has been no sign of the seizures returning. We're really keeping our fingers crossed that continues. He has been without his glasses for the past week or so since a combination of incidents meant they kind of fell apart...but we're picking up the new ones today. He's also been enjoying some lights we rigged up - even seems to calm him down a bit when he's having an angry session. The therapy sessions seem endless for very little progress, but he has reached out towards toys a few times recently which is another big first for him.

He did get to go swimming in the pool at a local special needs school the other day and apparently absolutely loved it - must do more of that.

Giggles & Fundraising Planning

In the past few weeks Ross has giggled, something he has never done before, a total of 6 times. This needs a combination of factors; having had a decent sleep, a decent feed, a general good mood, lots of tickling, and something else we don't understand yet as he doesn't do it every time. But when he does it it's a few seconds of very normal-sounding giggling. You may think I'm going on about this a bit much but that's a massive step for Ross and one that shows that the future may bring other developments.


Recently I've also confirmed my entry for the London Marthon 2010. When I got the email confirming my place I was very pleased, and very annoyed at the same time - all those miles pounding the streets in the dark over the winter... I'm very pleased to say that 4 good friends, Craig Clarkson, Dave Phillips, Ross Arnott and Graham Cruden are joining me and we're raising money for both The Childrens Trust (http://www.thechildrenstrust.org.uk/) and the National Society for Epilepsy (http://www.epilepsysociety.org.uk/) so at least we should have a bit of banter during the training and on the day (see the widgets on the top right of this page to see how our fundraising is going). The links to our fundraising websites are below;

www.justgiving.com/ross2010 for The Children's Trust
www.justgiving.com/ross2010epilepsy for The National Society for Epilepsy

We're also planning a charity Burns Supper in Edinburgh in February and a few other events to maximise fundraising - watch this space.

Over the past fews months we've been reducing the dosage of the steroids Ross has been on since he was 6 weeks old. There is a chance that in doing so his seizures return, but we're over half way and so far so good. It'll take until February to get him off them completely but he's still on 2 anti-epilepsy drugs plus several vitamins and minerals twice a day. And he really doesn't enjoy getting them...

Till next time here's a few more smiles...

Smiles to-date...

Ross didn't smile at all until he was about 7 months old. In fact he didn't really interact with us at all up until then; he didn't even cry for the first few months, then he could cry but couldn't be pacified.

Since the end of 2008 though, he has definitely been interacting with us more. You can calm him when he's screaming, he definitely knows his big brother Fin, and when you tickle him in the right places you generally get a big gummy grin. Whilst it's still difficult at times, these smiles make looking after Ross so much more rewarding than it was before.