Saturday

Well today myself and my side kick went to an epilepsy conference. This one was at Columbia and there were speakers form Cornell, Montifiore, another hospital in Long Island and Columbia.
It was a very nice day out and Finnian was very well behaved well he slept through alot of it or maybe prentended. At one time I gave him a toy and of course he started brushing it back and forth accross his teeth and it was making very loud squeaking noise and I told him to stop and he told me as clear as day "NO" everyone started laughing and of course he thought that was so funny and had to join in.
I didn't really learn alot because I have heard it all before. The parent to parent talk was interesting. I even got up and told Finnians story. All everyone wanted to know "how does his siblings treat him". You know its not something I would normally think of but Eoghan knows that he had a stroke and that he would be different and Maura just thinks he is supposed to be baby like because he is Finnian. She knows that her friends younger siblings are not like her brother but they are not Finnian. They also wanted to know what was their reaction when he had a seizure. Well to be honest now all they do is fight over who will get the camera and who gets to turn on the oxygen machein when he has a shout seizure. Its something that they are used to so it doesn't phase them any more. All they want to know does he have to go to the hospital so they can have a sleep over at Nannys house.
IF you get the Vigabatrine here in the US via the Share you will get a letter to let you know you have 3 weeks to get an ERG done and you have to get them done every 3 mths in order to keep getting the drug. But for us its not too bad I guess in some ways because Finnian is legally blind and most times doesn't react to light. Well from his stroke his right occipctpal lobe was basically shot and his left occipctial lobe is now a hot spot for seizures and they have done alot of damage so his vision processing center in his brain doesn't work even though his eyes are with out the lenses due to the catracts are perfect. We don't even put his contact lenses in any more because he keeps popping out the right lense we just put his sun glasses on when he goes out side.