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!
Monday, 1 March 2010
Friday, 29 January 2010
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...
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...
Thursday, 14 January 2010
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...
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...
Monday, 4 January 2010
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.
Sunday, 13 December 2009
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!!!
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!!!
Friday, 4 December 2009
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.
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.
Thursday, 12 November 2009
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.
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...
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