So last week was a bit nuts.
The tragic death of David Cameron's son Ivan who suffered from Otahara Syndrome, something not a million miles from what Ross has, really knocked me for six. He died following 6 very difficult years, seizures cruelly wracking his body and mind on a frequent basis. The similarities with Ross's condition are there, but one big difference is that Ross's seizures are under control, and have been for 8 months now. We didn't really appreciate before why the excellent doctors in Paris were so obsessed with getting his seizures under control, but there it is.
Ross will have to come off the steroids he's on at some point asthe side effects aren't great. They have made the difference in controlling his seizures whilst the anti-epilepsy drugs only reduced them, but did not eliminate them. We're hoping and praying that when he is weaned off them (we'll maybe find out when the doctors here want to do that when we see his new paediatrician on Wednesday), the seizures don't return...
Whilst my thought's last week were dominated by that, we also had opportunity to take immense pleasure from experiencing Ross giggling (something else we were led to believe may never happen). It's more a kind of 'gooo' but combined with his infectious smile, it's definitely a giggle. As long as he's had a decent sleep, some food and isn't struggling to fill his nappy...he's now pretty much smiling on demand. He's responding to tickles (back, front, sides, chin, pretty normal places really), voices and more than ever Fin's doting attention.
Tonight Ross and Fin's daily 'swim-for-kisses' session in the bath resulted in giggles. Great for Clair, me and also for Fin.
Fin started pre-school today and didn't shed a single tear - a major step forward for the wee man who's endured a massive amount of change in past months. To be honest, if he turns it on for the teacher like he does for us, he'll have them all educated in no time.
I have to mention David, Rory and Kerry, who are all well progressed in their marathon training, some perhaps more than others... They are all running the London Marathon this April in order to raise money for NSE - have a look at their websites and please support them if you can - http://www.justgiving.com/runforross - http://www.justgiving.com/kerrycrawford - http://www.justgiving.com/rorymcmillan
Monday, 2 March 2009
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Karl, its Kels here. I often read your blog to see how Ross is doing, and to hear about the giggles is fantastic it bought tears to my eyes. You go Ross!!
Best of luck to Finn too although I always thought he was “too cool for school” he’s such a dude. You must be so proud of them both.
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