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...
Friday 29 January 2010
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.
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