Thundercats got a bit too scary

Zack has a new seat. 

An R82 Panda and its fantastic.  He loves it, I love it, Scarlett loves it. A brilliant piece of equipment.

He can now sit again. He can go up to the table, all the way down to the floor. And it has it's very own table that attaches underneath the arm.

When we first got it I pushed it right down to the floor so Zack was at the same level as Scarlett. She stood in front of him grabbed both his hands and shook them in a little dance. They then spent the next ten minutes watching Thundercats together, with her resting her elbow on the arm of his chair.

Thundercats got a bit too scary so we turned it off. Quite violent those cat things.

Here's some pics of Zack in his new chair. (Note, we don't usually dress him up as a doctor in his chair.)

Thundercat time.

Okay, so it's not his chair but I've stuck it in just because. 

I could tell by his face he was a little shocked.

The chair has arrived. The OT came with it last week and oh. My. God. It's bloody bright orange.


Both Zack and Dan hated it. Zack hated it as soon as he was sat in the chair and Dan hated it on sight.


I on the other hand remained hopeful that both of them would get used to it. I was right. Zack now doesn't mind the chair and Dan, well, Dan's kind of getting used to it.


It's called a Sunbeam chair, Sunbeam....more like bloody fluorescent orange beam. Here is a link to the website that supplies the chairs so you can see what I mean.


http://www.jcmseating.co.uk/pages/sunbeam.html



The idea of the chair is to provide Zack with the right support for his body. This way we he can sit in a chair that keeps him comfortable and doesn't make him work too hard to try and keep himself in an upright position. By doing this he can then be encouraged to use his hands more as he won't be concentrating on trying to right himself all the time. The other benefit is that it keeps him symmetrical so that as he grows we can try and avoid him getting curvature in his spine and keep him straight.


Dan's first meeting with the chair happened when the OT was still at our house setting it up. I could tell by his face he was a little shocked. He asked if Zack needed all that padding and she very nicely explained the reasoning behind the chair. Dan didn't look too convinced. But she did say to us that the Pant's is still very young and developing so he might not need as much as he gets bigger. Zack by this time was in the chair doing his panic hands, going red in the face and panting. He wasn't buying into this extra support business. 
The OT told us not to worry that most children hate the chair at first and to just try him with small bursts of it. Small bursts, he had a big blimmin' long burst of it the next day and was quite happy.


So far he has sat in his chair for some t.v watching. Eastenders until his Dad told him he wasn't to watch that rubbish and put Top Gear on for him. He has used it for feeding. He ate six spoons of chocolate pudding whilst in the chair. He has even had a sleep in the chair. Good old chair.










I still hate the colour. 

Zack's seizures have been increasing again

Zack is getting a new chair. The O.T (occupational therapist) came to see us to discuss what extra fixtures and fittings the Pants may need around the house. We talked about seating and she showed me some pictures of what is called the Sunbeam chair but shall be known to me as the ugly fabric chair. It has all the right padding and support to make sure that Zack is sitting correctly and not having to work to hard to keep his balance. The chair can also be put on a little stand so that he can sit at the table with us when we have our dinner. It looks very good but all I was thinking was who chose the colours, they are all so garish and will not go with my home colour scheme. Still, it's good that he is getting this seating so I'll just get past the bad colour choice.


I also asked her advice about car seats. Lately Zack has been getting very upset whilst in his maxi cosi seat. He has had it since birth and is usually okay in it, not moaning too much, but the last few times we have been out he has crunched up, started breathing really fast and then made a loud crying noise. He got so worked up that by the time you get him out he is sick. I imagined that it was because he was too big for it and probably uncomfortable in it. So I asked her to take a look. We popped Zack in his car seat, she took one look and said, yep, I think he is too big for this now. I think the give away was the fact that Zack looked like a squashed up fat child in the seat, even his cheeks were squished together.


Zack now has a new car seat. It's bloody huge and a pain in the arse to put him in as it is still rear facing. However, he seems happier in it and has not done any screaming. Yet. I tested it out when I took him to school on Wednesday. 


At school he learnt how to take his socks off his feet, well we helped him pull his socks off his feet. He also did his stretches and thought it was very funny when they did the riding the bike song. After all the stretching, singing and stirring of a bowl of soup (don't ask), Zack flaked out so we came home a bit earlier. We also brought back his first painting for his daddy to take to work.


Zack's seizures have been increasing again. We have asked to see the neurologist a bit earlier than our planned appointment. Dan spoke to him and he  said that there are definitely other things we can try for Zack. He was also pleased to hear that Zack is smiling and laughing. He suggested that this may be because his brain is beginning to compensate for the parts that are damaged or that the hypsarrythmia is getting a bit better, or it could be both. Either way it shows signs of development in Zack which is a good thing. I just don't like seeing him have the spasms again. I was getting to used to hardly seeing them at all. I have learnt that it can take a while for things to get right. With some children you have to add medications, up some doses, lower others before you can get some form of acceptable levels. Somebody did tell me that it is a rollercoaster of emotions and this is quite true. Just when you think you are getting somewhere you suddenly shoot back down again. But we are trying to remain positive and take encouragement from Zack.


Just too add coldsville has entered the house again!! I blame the infected children at school.

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!