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...