He screamed blue murder

I have been chasing up the Occupational Therapist so Zack can get some form of supportive seating. I finally got hold of her, explained who I was and asked how long her waiting list was....3 -4 months. I see. Well there is only one of her and no other person in post and she covers the whole area which is why her waiting list is so long. So we had the discussion about how bad that was and how unfortunate it was that they can't yet fund another post. Then she said that she has put Zack as a high priority and will see him after Christmas. In the meantime she advised on a high-chair and to get one that reclines. I had tried to get one on ebay but in the end got a nice, shiny new one for Sir Pants. Well I have to spend his child benefit on something, at least this way Dan won't think I am spending it on shoes and shiny things.

Set up Zack's new high-chair. Popped him in new high-chair. He screamed blue murder. There were no tears he just protested a lot and did this at the same time as checking out what the hell was surrounding him on the left and right side of his face. He eventually calmed down but carried on protesting by whining and trying to break free of the harness. We are now breaking him in gently, he goes in it until he starts moaning sometimes this is half an hour, sometimes its five minutes. I am quite optimistic about the new seating arrangement. He hated his bouncy chair at first and now loves that, so I think he will grow to love his high-chair, eventually, one day, soon, like next week perhaps.

Steroid update

Still on them. Seeing a reduction in his seizures but not taking anything for granted because going on what happened before just because they are declining doesn't mean the hypsarrythmia is gone. Only the EEG will tell us that and he is going for one of them next Thursday. He hasn't been too bad on them. He is still vomiting a bit but Gaviscon is helping and he doesn't seem as irritable. So all in all not too bad.

Zack's sitting and head holding continues. He sits in the high chair without falling forwards and he can sit on your knee and doesn't seem to drop his head as much. I am still making him do tummy time and feel like the cruelest woman in the world but he has to do it, it's good for him. But not at 4.30am in the morning, that isn't good for me. This is what he had me doing this morning. He had woken up, so I took him in our room and had him lying on my chest. He spent a good 45 minutes trying to lift his head and peeping at me. He did very well at it, I just wish he would sleep then and do that at a more reasonable hour such as 3pm. Well best not to waste the time. In the end I got so fed up I told Dan he was hungry and he should probably go and take him for something to eat. Tut, tut, such a bad mummy.

Today Zack went Christmas tree hunting. We picked out a nice big one and I spent the next three hours decorating it. Zack didn't pay it the slightest bit of attention. The cat sat underneath it and Dan kept coming downstairs and saying is that all you've done, whilst pointing at some lights on the tree. All I've done. He hadn't spent three hours trying to unravel Christmas beads that had got all entwined. Plus, what do you expect, you open a card board box and the decorations miraculously fly on to the tree in a perfect order, like something out of a bloody Disney film......no, it takes thought, precision and a delicate balance of keeping your emotions in check so that you don't throw huge tree out of the piggin window!!! He did say it was beautiful after I had finished it though. If he'd have said anything else he would have been sat on top of the tree in replace of Gwyneth the fairy! Ho! Ho! Ho!