just because he was wearing his Daniel Craig shorts doesn't mean that he's James Bond
Zack enjoyed his swim. Well enjoyed it as much as he can. He was more bemused, bewildered and yet very, very into it all. I pulled him round on his front through the water and he kept his head up taking in the scenery. I also caught him checking out a little girl that was with her mum. He was looking behind me when I turned round to see a cute little baby in a pink costume. I told him just because he was wearing his Daniel Craig shorts doesn't mean that he's James Bond. We stayed in the pool for a good half hour, I reckon we could have stayed longer but I was getting a bit cold and wrinkly. I think it was fair to say that we both enjoyed our water adventure and shall be returning very soon.
I got a check up call today from the epilepsy nurse. She asked how Zack was getting on with his Vigabatrin. I explained that whilst he seemed more alert he was probably still having a couple of seizures a day so maybe it isn't work. She said that we won't know for sure until he goes for his EEG in a few weeks time, but it could be that this may be the best that we can get to with Zack.
I said that if it hasn't worked we wanted to speak with the neurologist. I also asked why we were going through all this when the original plan was to stop the hypsarrythmia, why are we now accepting that this may be it. I can't really remember the outcome of the conversation but I think I made the point that we want to talk to the person making the decisions rather than the ones just administering the medication. I felt like I had been a bit tough on her as it isn't her fault she is just doing her job but I am not prepared to give in so easily, there has to be more options. If we look at the positives Zack is a lot more alert, he is responding more and tonight I even managed a little conversation with him. Nothing exciting, we didn't chat about Eastenders or the state of the world today, it was more like, helllooooo little man, gggggggghhhhh, ggggghhh, oh did you, gggghhhhh, that's lovely, ggggghhhhhh gaaaahhh. Not very interesting but so exciting for me.
We also had a call from the Family Support worker. She told me that we will be given some Direct Payments for three hours a week. This is great I said and we arranged an appointment for next week. I ended the conversation by saying, okay then, thanks, yeah, love you, bye.
I put the reciever down and immediately thought, oh my God did I just say love you, oh shit, I bloody did, I said love you, noooooooooo. Now I bet she thinks I am a right crazy lady, bloody hell, she will be marking up her social workers chart for crazy ladies!!!! I am hoping by next Wednesday she will have forgotten about it. Oh God. I hope she does forget.