maybe tapping his hand is like morse code for him

My telephone stalking gained results. So far we have managed an appointment with Zack's physio, arranged an appointment with the O.T and met our Family Support Officer. 


The physio appointment went well. Zack was awake and alert and she was pleased to see that once relaxed he happily raised his neck to look round the room. Previously Zack used to hunch his shoulders up with a tendency to drop his head forward. He still does this a little but not as much. I told her he is tolerating his tummy time a lot more and even tries to lift his head up. 


We have had a little break-through with Zack's head holding and as much as I would love to say I discovered this trick it was in fact his daddy who worked it all out. Dan was looking after Zack one Saturday afternoon, he had all his toys out on the floor and was trying to encourage him to lift his head up off the mat. He tapped Zack's hand and he suddenly pushed himself up and lifted his head. "Look at this" Dan shouted,


 "oh yeah" I said, "he is lifting his head, he does that for me sometimes." 


"No, watch when I tap his hand, he does it all the time." Sure enough he did. 


I tried it myself today. I had Zack lying on the floor, arms in front he wasn't really trying so I tapped his hand. Tadaaaaaa.....he pushed himself up and lifted his head. Blimey, maybe tapping his hand is like morse code for him. But the even bigger break-through was today, he held is head up for at least a good minute, it was brilliant. I hope he keeps improving with this as then we can work towards crawling. 


We had a visit from the Family Support Officer today, otherwise known as a Social Worker. Most folk would worry about such people calling round to your house but I'll take all the help I can get. We discussed Direct Payments so that I can get extra help and support and I went through the umpteen people that Zack visits. She had already spoken to one of the doctors about Zack which was a bit strange as this doctor only treats him for one area and doesn't know him that well, but then I thought well maybe she just needed some background to his condition. I also had a good moan about the fact that in our area there is no parent support or baby and toddler groups for children with disabilities who fall into the early years category. We also discussed nursery and I told her that I wouldn't be happy with Zack just going into a mainstream nursery as I don't think he would get the one to one support he needs. She asked if I thought he needed one to one support. Well yes I do. It's not like you could pop him into a class and expect him to take on board all that's going on, he needs someone to work with him. Anyway, he isn't going into a nursery and by the time I think he will be ready he may have developed even further. 


Zack and I went to school for the second time. It was brilliant. The little class is so lovely as is his teacher and her assistants. Zack now has his photograph on the picture of the school bus which is on the wall. He was also given his own little bag that has a new hairbrush, toothbrush and face-cloth inside. We then had to get out each item and brush our hair, clean our teeth and wash our face. Well Zack's not got any pegs to clean yet but he did stick his tongue out and brush that. 


We also sang some nursery songs but by that time Zack had fallen asleep so I chose a huge chicken hat for him to wear for when we sang Old McDonald, I think he may have chosen the cow hat but he will fall asleep and leave me in charge of dressing up outfits.


We went on to do stretching and then he woke up just as we were smelling different foods. After that we all sat in a circle and had a snack. Zack had a little bit of a yoghurt but didn't really want it so I ate it for him. Whilst we were waiting he had a look at a fibre optics lamp and then we had art time. Zack painted his very first picture. We used cut up fruit and veg to dip in the paint and press onto the paper. By the end of it Zack had a lovely selection of circles. His picture now has his name and date on it and will probably be on the classroom wall. Then it was home-time, he got given a wonderful sticker and was chosen as best student in the class. Well done little man. The class is really great I understand what they are doing and why they do what they do in each session. It's good that he is experiencing new things and I am also getting new ideas of how to work with him. Never thought I'd say I was looking forward to going to school.

Zack is on his full dose of Vigabatrin. Rather than knock him out he still remains fully alert. He only falls asleep in the day for about half an hour and still goes to bed about 9pm then up at 7am. Seeing small seizures but nothing too huge I don't think as of yet it has stopped his spasms but our EEG is booked for the second week in February so we shall see then. 

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