So the chickenpox vaccination didn't work...Ross was an angry boy for several days last week. It was almost like he was back before Christmas when he couldn't really be pacified. The spots appeared on Tuesday and are still looking pretty horrid a week later. He seemed to get back to himself a bit by the weekend which was good as it was a scorcher and we prioritised exploring the local area over doing the jobs I've been putting off doing in the house.
We also saw the paediatrician on last week - she seemed pleased with how Ross was physically, despite the chickenpox, and especially on how much more subtle his limbs were compared to a few months ago. This is all down to Clair who does most of the daily massage sessions with Ross, and the excellent therapists he sees every week now. She also had the results of the EEG scan of his brain activity which was done a few weeks ago. It still shows pretty erratic activity, bgut she seemed to think it was focussed on one side. We'll be taking Ross for an MRI scan some time soon to see if there is something physical which could be the source of the problems. The other news from that appointment is that we have started to reduce the amount of steroids which Ross gets, and the plan is to reduce by a little more each week until hopefully he's off them completely. It's only by a small amount at a time and at this rate it could be into next year before he's off them completely, but we're happy to go very slowly as the risk is that the seizures return, and this risk is higher if you make major changes to the medication. It's all wait and see now - needless to say we're hoping he stays seizure-free...
Went for a longer run on Saturday (in the sunshine) and felt really good at the end - impressing Clair with my sprint down the homeward stretch. Starting to think about the list of kit I need to take to the Alps. We've got our transport booked and are staying in a cheap (and hopefully cheerful) hotel in Chamonix. Also got 2 nights booked in the Cosmique Refuge hut up on Mont Blanc so I think we're getting there...
Thanks to some late big money donations, we're now only £270 short of our target for the NSE. If you think any of your friends or family would like to donate, please pass-on the website details to them to help us close the gap!
Monday, 1 June 2009
Friday, 22 May 2009
National Epilepsy Week
This week has been National Epilepsy Week so many of the epilepsy charities have been holding events to raise funds and awareness. I attended the Joint Epilepsy Council lobby of MPs at Westminster on Wednesday. Many of us had contacted our MPs asking them to join us so we could tell them our personal experiences of epilepsy and highlight the low funding for research and care which the Government provides. My MP was "busy in his constituency", which I think means he was off sorting out his expense claims, but several other MPs did turn up and at least listen. They also witnessed a severe seizure which was not planned but must have had quite an impact...
I also attended a lecture by Prof Helen Cross, the paediatric neurologist from Great Ormond Street who say Ross when we came back from France. I mentioned that Fin has had chickenpox (the worst case I've ever seen with spots in his mouth, eyelids and everywhere - 53 behind one knee was as far as we got on counting them...) and she was very concerned to know if Ross had been immunised against them or not. He hadn't as the GP just wanted to see him when the first spots appear - turns out it can be very serious for people whose immune system is suppressed (like Ross's is as a result of the steroids). After several ours in A&E and a blood test, we took Ross last night to get his jab, so hopefully he shouldn't get the pox at all... Lesson we've learnt is that Ross's case is so rare it's beyond the experience of most GPs and we should go to the paeditrician for all problems in future.
We're having a final push in the last few weeks before our Mont Blanc ascent to try to hit our target of £15, 780 for NSE - thanks to the generosity of everyone so far, we only need a further £660. Rich and I fly to Geneva on 11th June to try on that Friday/Saturday. Hoping for good weather!
Planning a long run this evening, but hopefully not as long as last weekend's when I managed to get lost in the woods and Clair was for sending out a search party...
I also attended a lecture by Prof Helen Cross, the paediatric neurologist from Great Ormond Street who say Ross when we came back from France. I mentioned that Fin has had chickenpox (the worst case I've ever seen with spots in his mouth, eyelids and everywhere - 53 behind one knee was as far as we got on counting them...) and she was very concerned to know if Ross had been immunised against them or not. He hadn't as the GP just wanted to see him when the first spots appear - turns out it can be very serious for people whose immune system is suppressed (like Ross's is as a result of the steroids). After several ours in A&E and a blood test, we took Ross last night to get his jab, so hopefully he shouldn't get the pox at all... Lesson we've learnt is that Ross's case is so rare it's beyond the experience of most GPs and we should go to the paeditrician for all problems in future.
We're having a final push in the last few weeks before our Mont Blanc ascent to try to hit our target of £15, 780 for NSE - thanks to the generosity of everyone so far, we only need a further £660. Rich and I fly to Geneva on 11th June to try on that Friday/Saturday. Hoping for good weather!
Planning a long run this evening, but hopefully not as long as last weekend's when I managed to get lost in the woods and Clair was for sending out a search party...
Monday, 11 May 2009
Happy First Birthday Ross!!!
Hard to believe it's already one year, but yes it's Ross's first birthday today - thank you to everyone who has sent cards and gifts. We've celebrated with both sides of the family in the past 2 weekends, and plan to have more cake when I get home from work this evening...
I don't need to point out to those who know us what a year this has been. The wee man has been through so much already and has so many uncertainties ahead of him. It felt very bizarre to find myself telling him I was giving him a special birthday treat this morning by giving him his bottle before his medicines, but that's the surreal world we're living in. Maybe one day we'll wake up and find out it's all just been a bad dream...
At the same time, no matter how tough it gets, Ross has a smile that can raise everyone's spirits, and I know that whatever the future brings we'll find a way to get through it together.
Friday, 1 May 2009
Why raise money for the NSE?
I came across these articles from the April edition of the American edition of Newsweek magazine. Not only do they give an insight into the lives of people living with epilepsy, but they offer a call to action to raise awareness of this terrible disease, and to insist on the funding required to make the breakthroughs in understanding and treatment which will improve the lives of epilepsy sufferers and their families. The NSE helps by funding exactly this sort of cutting-edge research.
Please click on the links below to access the full articles. Otherwise, at least just read the extract below from the editorial.
http://www.newsweek.com/id/193586
http://www.newsweek.com/id/193587
http://www.newsweek.com/id/193484
"Though the most overt examples of discrimination and demonization have faded with time, epilepsy still receives too little attention, either from the medical community or the public at large. Why? One reason is that advances in drug treatments have created the popular impression that epilepsy is now an essentially manageable condition. (Which, for two thirds of patients, it is. But that still leaves a third for whom it is not.) It is thought to be rarely fatal, controllable by medication. There is a terrible irony here: because most people with epilepsy are not in a constant state of seizure—they are, rather, in perpetual but quiet danger—their condition can appear less serious than it truly is. It is all too human, but all too true, that a problem, including the problem of a serious medical affliction, stays out of mind when it is out of sight.
Because so many of those who must endure it do so valiantly, and with grace and grit, it is more difficult for those not directly affected by it to grasp that epilepsy can kill. Put harshly, we need more of a cancerlike sensibility around epilepsy. We cannot usually see our friends' cancer, but we do not hesitate to invest the search for a cure for different cancers with the utmost cultural and political importance. We must now do the same with epilepsy. "We want complete freedom from seizures," says Susan Axelrod. "We want future families to be spared what so many other families, for so many years, have endured. Lives should not be defined by diseases." No, they should not—which is why all of us must focus on understanding epilepsy. And then we must defeat it."
Please click on the links below to access the full articles. Otherwise, at least just read the extract below from the editorial.
http://www.newsweek.com/id/193586
http://www.newsweek.com/id/193587
http://www.newsweek.com/id/193484
"Though the most overt examples of discrimination and demonization have faded with time, epilepsy still receives too little attention, either from the medical community or the public at large. Why? One reason is that advances in drug treatments have created the popular impression that epilepsy is now an essentially manageable condition. (Which, for two thirds of patients, it is. But that still leaves a third for whom it is not.) It is thought to be rarely fatal, controllable by medication. There is a terrible irony here: because most people with epilepsy are not in a constant state of seizure—they are, rather, in perpetual but quiet danger—their condition can appear less serious than it truly is. It is all too human, but all too true, that a problem, including the problem of a serious medical affliction, stays out of mind when it is out of sight.
Because so many of those who must endure it do so valiantly, and with grace and grit, it is more difficult for those not directly affected by it to grasp that epilepsy can kill. Put harshly, we need more of a cancerlike sensibility around epilepsy. We cannot usually see our friends' cancer, but we do not hesitate to invest the search for a cure for different cancers with the utmost cultural and political importance. We must now do the same with epilepsy. "We want complete freedom from seizures," says Susan Axelrod. "We want future families to be spared what so many other families, for so many years, have endured. Lives should not be defined by diseases." No, they should not—which is why all of us must focus on understanding epilepsy. And then we must defeat it."
Thursday, 30 April 2009
Over £10,000 from our London Marathon runners!!!
I've just checked the Justgiving pages of our London Marathon runners to see how their fundraising finished up. There may well be more to come, but as of today we already have an amazing grand total of £9,321 plus £833 from Gift Aid, so breaking the £10k mark.
Rory and Kerry managed to raise over £7.5k between them including the proceeds from the car-wash and coffee-morning at the church, and a fundraising pub-crawl (as Kerry said, it was her 'yang' to counter the 'ying' of Rory's car-wash, just not sure it was great final preparation a few week's before the marathon...), with the balance being made up by Dave's total, including the money raised at his business network dinner.
So from the efforts of these 3 individuals who have been touched by Ross's story enough to dedicate their own time and energy to raise money to help people with epilepsy, the NSE are £10k better off. I can't thank Rory, Kerry and Dave enough for this, and I think they already know how much it means to me.
If you have been inspired by their efforts, and feel like you might just be interested in giving the London Marathon a go in 2010, please let me know at karl@archiesmountain.com as I'm feeling a bit inspired myself (even more so than I do every year having just watched the marathon...).
To run, or not to run???
Rory and Kerry managed to raise over £7.5k between them including the proceeds from the car-wash and coffee-morning at the church, and a fundraising pub-crawl (as Kerry said, it was her 'yang' to counter the 'ying' of Rory's car-wash, just not sure it was great final preparation a few week's before the marathon...), with the balance being made up by Dave's total, including the money raised at his business network dinner.
So from the efforts of these 3 individuals who have been touched by Ross's story enough to dedicate their own time and energy to raise money to help people with epilepsy, the NSE are £10k better off. I can't thank Rory, Kerry and Dave enough for this, and I think they already know how much it means to me.
If you have been inspired by their efforts, and feel like you might just be interested in giving the London Marathon a go in 2010, please let me know at karl@archiesmountain.com as I'm feeling a bit inspired myself (even more so than I do every year having just watched the marathon...).
To run, or not to run???
Monday, 27 April 2009
The London Marathon 2009
We had a great day in London yesterday cheering on the runners at the London Marathon, especially our 3 heroic runners for the NSE, who each have had their injury problems to content with, but who all finished safely.
It was a beautiful sunny day, ideal for watching, but maybe a little hot for running.
All 3 did really well, with Rory as the surprise front-finisher. With only 1 mile to go, he was striding along as if he was just out for a brief jog...
Dave also did really well and even stopped for a chat.
And it may look like Kerry had decided to get a piggy-back from this old dear...
...but she did actually run the whole way, through considerable pain due to a knee injury.
Ross enjoyed every minute of it!
Ross enjoyed every minute of it!
Wednesday, 22 April 2009
Easter eggs, house moves and car-washes...
We had a chocolate-filled Easter weekend in Scotland for the Christening of some friends kids. Fin enjoyed his eggs and I enjoyed Ross's... Kirsty and Kenny decided to ask for donations via archiesmountain so more than £500 was added to the total as a result of their generosity - thanks!!!
Been a busy couple of weeks with our trip, hospital appointments and moving house. We had an EEG (scan of Ross's electrical brain activity) last Wednesday. He had lots of these in France but this was the first one in UK. To me the tracings on the screen looked very similar to the ones in France, still pretty chaotic, but the technician doing the scan seemed to think it wasn't as bad as I thought. We'll have to wait for our next paediatric appointment to get find out what it all meant.
We've also moved house so are finally into our own place again. Boxes and stuff everywhere, but it's great to be able to get settled once and for all. We're in Bookham in Surrey, not far from where we were before but we've really noticed the reduced space having been in 5 bedroom houses for the past 2 years - we've restocked the local charity shop and the garage is still pretty full. Bookham is very nice and we're close to the common with lots of woodland paths - no excuse now for not doing some longer runs in the run-up to Mont Blanc.
On Saturday there were 2 separate events to raise money for the NSE, organised by our intrepid NSE marathon runners;
- Rory McMillan, Kerry Crawford, my family and friends and everyone at Ballygrainey Presbyterian Church in Northern Ireland held a charity car-wash, coffee morning, and cake and vegetable sale and raised an amazing £2500
- David Gallagher's business network in Bedford raised £1000 at their annual awards dinner on Saturday night
A massive thank-you to Rory/Kerry/David and everyone else involved. The money's all adding up...
A specialist optician came out to see Ross this morning and was very positive about his sight. Ross was following lights and objects much more so than we'd seen him do in the past and we're very encouraged to hear some positive news. I guess we need to work on stimulating him a bit more so he'll be able to sit-up with me and watch the Lions beat the Springboks this summer...
Finally, my brother William and his kite-surfing pal's website is live. They're supporting 4 great charities, one of which is NSE and with over a dozen kite-surfers planning to cross from Northern Ireland to Scotland at the end of the summer I'm sure they'll raise lots of money. Please visit www.kitechallenge.com to see what they're doing and to donate if you wish.
Been a busy couple of weeks with our trip, hospital appointments and moving house. We had an EEG (scan of Ross's electrical brain activity) last Wednesday. He had lots of these in France but this was the first one in UK. To me the tracings on the screen looked very similar to the ones in France, still pretty chaotic, but the technician doing the scan seemed to think it wasn't as bad as I thought. We'll have to wait for our next paediatric appointment to get find out what it all meant.
We've also moved house so are finally into our own place again. Boxes and stuff everywhere, but it's great to be able to get settled once and for all. We're in Bookham in Surrey, not far from where we were before but we've really noticed the reduced space having been in 5 bedroom houses for the past 2 years - we've restocked the local charity shop and the garage is still pretty full. Bookham is very nice and we're close to the common with lots of woodland paths - no excuse now for not doing some longer runs in the run-up to Mont Blanc.
On Saturday there were 2 separate events to raise money for the NSE, organised by our intrepid NSE marathon runners;
- Rory McMillan, Kerry Crawford, my family and friends and everyone at Ballygrainey Presbyterian Church in Northern Ireland held a charity car-wash, coffee morning, and cake and vegetable sale and raised an amazing £2500
- David Gallagher's business network in Bedford raised £1000 at their annual awards dinner on Saturday night
A massive thank-you to Rory/Kerry/David and everyone else involved. The money's all adding up...
A specialist optician came out to see Ross this morning and was very positive about his sight. Ross was following lights and objects much more so than we'd seen him do in the past and we're very encouraged to hear some positive news. I guess we need to work on stimulating him a bit more so he'll be able to sit-up with me and watch the Lions beat the Springboks this summer...
Finally, my brother William and his kite-surfing pal's website is live. They're supporting 4 great charities, one of which is NSE and with over a dozen kite-surfers planning to cross from Northern Ireland to Scotland at the end of the summer I'm sure they'll raise lots of money. Please visit www.kitechallenge.com to see what they're doing and to donate if you wish.
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