We are still in coldsville....otherwise known as man flu house. Both Dan and Zack have a cold, I seem to be immune to it. I feel like I am in one of those disaster films where everyone has a virus and I am the only human survivor that has an immunity to it......oh no...hang on, sorry, nope, I am thinking I am in that film I was watching the other day, I Am Legend.
Anyway, back to the Pants. Yes he still has his cold. Just when I thought he was getting better he decides to have a day of coughing and being in a bad mood. A real, I've got a cold and I feel so sorry for myself mood. I am hoping it will have cleared by the end of the week, if not it's off to the GP with him like any normal over-anxious new mum.
We met with the neurologist from Alder Hey the other week about Zack's epilepsy. He seemed quite impressed with Zack's Moose socks, I think the man has an appreciation of 'fun' socks, his were striped ones ala Rainbow.
It was rather a quick meeting but the bottom line is we are increasing his sodium valproate medicine over the next few weeks and then Zack will have another EEG done. The consultant explained that Zack's brainwaves are a little chaotic. To put it simply instead of just thinking normally it's all a bit fuzzy, Dan likened it to interference on the television, like when you get a snowy picture. Not that you would get that nowadays, what with all this newfangled digital malarkey, he means like back in the olden days when you had an ariel on top of the t.v. or if very poor, a wire coat-hanger and you would have to move it around until you got a clear picture or have someone stand by the tv for an ultra fine high definition version.
Anyway back to Zack. The medicine hopes to make the picture a little clearer for Zack so that any activity that takes place in his grey matter will be able to do so more smoothly. When he has a seizure it's simply a burst of energy within his brain. This hypsarrhythmia that Zack has causes the seizures which could also be delaying his development, so the idea is the more control we get over it, the more his development may progress. (That's the theory but it's not for certain that this happens we just have to wait and see.)
Over the past couple of days Zack has introduced a new seizure into his repertoire. I don't like it. He raises his arms up and moves them over to the right, his head turns to the left and his eyes go really wide as though he is in shock. This lasts for a few seconds then he comes back to the land of the living and starts to cry. It's the crying I don't like, this one obviously distresses him. I am hoping the medicine will put a stop to them but for now I am keeping an eye on them. If these start increasing I shall contact the epilepsy nurse for some advice.
Sometimes I think if I sat down and really thought about all the problems Zack has and the awful outcomes that could be I think I would drive myself crazy. There are some parents having been through a similar experience that say the first two years are the most difficult. I suppose they could be right. Everything is unknown for us and the outcome could be not so good or much better than we had hoped. I have to remind myself to keep living in the moment and not get so obsessed with the future that way I can enjoy my time with Zack rather than sit there worrying about his prognosis. And I do love spending my time with Zack.
2nd October 2009
My immunity is shattered. I have been infiltrated by the germinator. I have the bad cold. Zack got taken to the doctors and has been given antibiotics for a chest infection. I never new babies could cough and snot so much goo, these are not pleasant times, especially when the Pants coughs sick into your hair. Nope, not good, not good at all. Get me tea, toast and magazines I need to recuperate.