Saturday, 21 September 2013

Seth is an anomaly!

Last week was hard and it reminded me how fragile our family life is. We took Seth to our GP Friday; he gave Seth a thorough examination but also found nothing wrong. He was unconvinced that a new tooth could cause Seth so much distress, especially when I told him that Craig had been wiggling Seth's wobbly tooth and Seth actually stopped crying and even giggled.

And then Seth fitted. Seth has a fit every few months and they are very small and is an indication that Seth is extremely tired or under the weather. This was something different. We were actually out and Chloe, who we receive 'Direct Payments' for to take Seth out and give us a break, was looking after Seth for the day. She was texting us updates and Seth was having a better day. Then she phoned to say that during tea Seth had fitted twice. The worst lasted over 90 seconds and he had been completely absent and his breathing was extremely shallow. Naturally we came straight home and found him in bed and happily chatting to himself. Happier than I'd seen him for 4 days. (good grief - this whole experience had only lasted 4 days? It felt longer!)

When Seth was about 8 months old this was what life was like. He was unhappy and cried all the time. I remember going to a GP and being told that he had dry skin and that I should use more cream. Really helpful! Several weeks later Seth's fitting started and it was like a storm had cleared: immediately after a fit Seth was always more alert and aware of his surroundings. He even made eye contact for the first time. Our consultant warned us, however, that these fits were very harmful to Seth and that if he ever started experiencing them again then we could lose all the development that Seth has gained.

So Seth's fit last weekend after several days of crying transported me back to a fearful time. We actually have agreement that we can book Seth straight in for an EEG if we are ever concerned, however the few times Seth has fitted since having this agreement has been over a weekend when the department isn't open! So we simply had to wait and see what happens. Either Seth fitted because he was in fact poorly and that was why he was crying - even though two GP's couldn't find anything - or he was crying because a fit was building up. If it was the former then a cold, or something, would present itself and if it was the latter he would probably fit again (when it was bad they used to come in clusters).

But nothing happened. He gradually just got happier each day. His wobbly teeth fell out (I never saw it again, Seth must have swallowed it) and there is no sign of a new tooth yet. One week later and although there has been a period of time each day that he has got inexplicably,very upset, in general he has been his normal happy self. Even the bath time crying seems to have passed.

So I've started to relax again (a little!). What else can I do? We still don't know (as usual) why Seth was so unhappy. Maybe it was his tooth, maybe he was just feeling a bit crap and maybe it was because he's been doing so much lately and brain just 'spazzed out' and gave him a fit. Maybe next week this will start all over again or maybe it will be like it never happened (apart from the extra tension around my shoulders!)

Thursday, 12 September 2013

One of us Needs a Sedative.

Last weekend I noticed one of Seth's front teeth was wobbly. It was a reminder that he's growing up! I wanted to try to explain to him what was happening. So when I put him to bed Sunday night I sat and told him that his tooth was wobbly because he was growing up into a big boy and that once it had gone he would get a new, adult tooth. I felt a bit silly doing this because really, what was the point? He barely looked at me whilst I was talking and probably had no idea what I was saying. But then again, maybe he took some of it in. And if he was a 'normal' child I would have explained to him what was going on - losing his first baby tooth is a big deal.

I talk to Seth, in that I've always told him what I'm doing as I'm doing it, to help him understand his world and in the hope that repetitive, spoken routines will help him do things for himself one day. So, I talk through dressing and cleaning and feeding. But we don't talk. I can't ask him 'how was school?', for example. In fact I read somewhere that you should only ask specific questions such as 'did you enjoy such and such activity?'. Something to do with open-ended questions like that are difficult for a child with learning difficulties to get their head around. However, most of the time I don't know what Seth actually did at school that day so I can't ask be specific in my questioning. So maybe I'll talk and get an 'ugh' or a 'boo' back which is as close to a conversation I'm going to get. And actually that's pretty cool because for a very long time we got nothing back at all.

But this whole wobbly tooth thing has moved on dramatically and we are now re-living the nightmare of Seth teething. On Tuesday evening, Seth spent from 8 until almost 11 screaming the house down and nothing we gave him calmed him down. He finally cried himself to sleep. Surprisingly, he slept through the night (or at least he didn't wake us up) and was fine, albeit tired, in the morning. So he went to school. I arrived at my parents house after work on Wednesday (they pick him up from school for us) to find him in the same state. This time I called the out of hours number. By the way, can you believe that whilst giving your name and contact details they then ask you for your ethnicity. I'm completely stressed with a screaming child in the background trying to get to through to someone who might be able to help me and they waste time asking about ethnicity. I completely bit the guys' head off for that. Anyway, after some time on the phone answering questions, waiting most of an hour for a call back and then an hour or so at the out of hours clinic it was confirmed that there was nothing wrong with Seth. Except of course for the screaming. He was very flushed so we all agreed it must be his tooth.

Today has been mostly the same and if in the morning there is no change then we're going back to the doctor. I don't know about Seth but I can't take much more. Are we going to go through this for every tooth he loses? Previous experience suggests that he seems to experience pain acutely, maybe because he is so 'within himself' and also we can't distract him with toys or television.

Has anyone reading this who has had kids old enough to lose their baby teeth found it a difficult time?

Sunday, 8 September 2013

The Simple Joy of Moving Your Hand

Seth is gaining so much more control over his own body. You can see it in the way he moves his hands, how he steps more confidently and the way he can sit on the floor and twist his torso round to look around him. These are all recently acquired skills through the smallest of little 'steps' so subtle that we barely noticed them but amount to Seth actually moving himself and interacting with things around him. I can actually simply sit and watch him just moving his hands in front of him; moving his fingers, feeling the velcro on his straps or waving his hand through the air. We have started to play 'knock the bricks over'. A friend bought Seth, a couple of birthday's ago, magnetic, stackable shapes. And finally we are playing with them. I stack the bricks 3 high and Seth knocks them over. Magical: it's clumsy movements but they are deliberate and it makes him giggle. And my heart stop.

It also means that life has gotten just a little easier. When we travelled to Leeds last weekend we stopped on the way for some lunch. We were able to sit Seth on the chair and feed him a sandwich instead of his wheelchair.

We can also have carpet picnics and feed sandwiches to Seth sitting on the floor, which means we don't always need to lug supportive seating with us.

This also mean though that with Seth's new mobility we lowered his bed not a day too soon. He now sits up in bed and bum shuffles his way to the other end.

There is a slightly high side along the bottom, as well as down one side so he just pushes his feet against it but I'm certainly relieved that there isn't such a long drop any more.