Seth woke up at 4.30 this morning screaming the house down and I still have no idea what was up with him! After carrying him round for a while and offering him a drink which was very adamantly refused I defaulted to the 'calpol and back to bed' routine. Eventually he did calm down and went back to sleep. The whole time I was conscious of the guy on the other side of the wall tutting away and got more and more annoyed at what he'd said and how uncomfortable I now felt. So I kept an eye out for the old man that lives a few doors down and wanders up and down the street. He doesn't speak very good english but he's very friendly and I've accosted him before when I've needed to speak to someone about issues with the mosque (usually the level of noise!!!). Anyway so I pounced on him and asked to talk to someone and he brought me his daughter. I explained what my neighbour had said and explained that whilst I was sure it was a language break down it was also quite rude and had left me feeling very uncomfortable. I also pointed out that we can hear his prayers at all hours of the night as clearly as he could hear anything from us. She was lovely and agreed that he probably hadn't meant it as it had come out and that she would have a word with him as it was unfair especially how much noise I put up with. So I'm feeling better again. Thing is, Seth is actually sleeping loads better since I went on that sleep seminar organised by Cerebra in Manchester. I put in practice some of their tips and on the whole he's a lot quieter at night.

Nosy neighbours

I was in the front garden this afternoon, weeding. That in itself is amazing. But I'm there and the man who lives in the mosque next door to us called to me across the wall. In his faltering English he told me that my baby cries a lot and I should be caring for him. Now, I took his blunt-ness to simply be a lack of the grasp of English and that he hadn't meant it to come across as that. He was smiling as he said it. & to be honest as I can clearly hear him singing his prayers from Seth's room I often wondered what he made of Seth's regular nightly screams. & now I know! I assured him that we didn't leave Seth crying and that often we couldn't soothe him. I also explained that Seth was 'disabled' and couldn't talk so can't say 'Mummy I'm hungry' or 'Mummy I had a bad dream' or 'Mummy I feel poorly' and so screams. At that my neighbour did start to back away from me. I'm not sure how much he understood and I don't really care. Half of me wanted to tell him to bugger off and that's it's none of his business and the other half was actually impressed that it bothered him enough to talk to me about it.

Not the royal wedding.

We went in for the EEG last week. It was the first time Seth had slept during the test in a while so they were really pleased. I'm still waiting to hear if we've learnt anything about his recent fits from it but its good to have it anyway. The woman conducting the test told us that next time Seth has a series of fits we should phone them directly so that they do it at the time, which is great to hear.

I've decided not to go back to the osteopath. I still think they did some good for Seth but even the new guy we were seeing, Pierre, started talking nonsense and it just pissed me off. Seth was very talkative when we first went in for the appointment and Pierre told me that Seth's jabbering meant that he Seth was telling him what he wanted Pierre to work on. I thought he was joking, but no he was serious. Now I love hearing Seth 'talking' but I rarely hear anything that I can actually understand! Then when I questioned if we were seeing any real improvement in Seth's development that could directly be linked to the sessions Pierre told me that I need to look with heart and not my mind and that he could see by Seth's energy the improvements. During the session Pierre also started telling me about his work with horses and when I raised my eyebrows he said 'well horses are very sensitive creatures you know' and at that I actually laughed out loud. I couldn't help myself! I've heard of people doing reiki on horses and I really don't know horses enough to know how sensitive they are but it sounded like they were the ones giving the sessions to him which now I realise probably wasn't what he was saying. Oh well!

Sunny days!

We dusted off Seth's trike today for the first time since winter and took it for a spin around Willens Lake in Milton Keynes. With the larger boot I can fit it into the new car. Of course the idea is to use it instead of the car but I'm not going out onto the road without a practice session first. Seth still thinks its fab and shrieked and giggled a lot (in fact as I'm sitting in the garden typing I can hear him in his bed still shrieking and laughing, I think he's had a good day :)). I've heard of something called 'muscle memory' but my bottom definitely had forgotten what it was like to be on a bike seat!

We did some 4-point kneeling this afternoon, and Seth is definitely starting to get the idea of holding weight on his arms- and when he was on his tummy he was bringing his knees up so his bottom half moves in the right direction. I really think that he's gonna get there eventually, that one day - it could take another year, but one day - he'll hold himself up with his hands.I think the main thing is that he's enjoying trying and he's really exploring what he can/can't do, like doing squats when he's standing and leaning further and further back when he's sitting so he can pull himself upright without falling over.

The car has arrived!!!

Wow, thanks for the virtual hugs and hoki sayings. Very appreciated :)

Anyway to misquote Winnie the Pooh: how can anyone be uncheered with sunny weather like this?
We're off for the Easter Holidays but managed to get Seth into holiday club for 2 days at his school so Craig and I will have some time to ourselves next week. Which will be nice! Some of that time will be spent doing DIY but hey ho, that will be good in its own way.

The great news is that the CAR HAS ARRIVED!!!!! A little later than the 1st week of March that I was originally told but that always happens doesn't it? Anyway, it is SWEET and very yummy. I love its DAB radio (tuning in 6 music was the very first thing I did) and the blue tooth technology - it's even got voice commands for goodness sake!!! Plus I can fit all of Seth's stuff in the boot, yeah.

Deep, dark holes

I've been in a deep, dark hole. Seth has been fine. He hasn't shown any further signs of fitting and we've got an eeg scheduled in a couple of weeks so we'll know a little more then. I also went to my sleep seminar up in Manchester which was interesting; I learnt a bit about the sleep cycle, why it's important to keep the bedroom dark and a good pre-sleep routine and that it would be a good idea for us to keep a sleep diary for Seth that we can show the epilepsy nurse when she contacts us. I also went to Nottingham for a day's course on deep tissue massage which was just brilliant.

& yet I found myself in the bleakest of mindsets for the last several days which thankfully I seemed to have crawled out of, at least for now. I just feel like an absolute failure - at work, at motherhood, at life in general! & if that sounds completely self pitying - it is!

Epilepsy

I just discovered that today is epilepsy awareness day. Go to Derby Daves blog to find out more.

We spent most of yesterday at the hospital; Seth spent the day fitting. He had a seizure the previous 2 Sundays but they were different to the ones he had experienced previously and I only noticed them because they began with a shout. There was no flailing around, he simply pursed his lips as if sucking on something sour, then pulled his mouth into a sneer. It only lasted a minute or so and although was unresponsive he isn't always that responsive so I was never actually sure if it was a seizure, except that he immediately zonked out and slept for a couple of hours. Then during his tea Thursday he did it again and I was convinced. He's shown no sign of illness and has been sleeping consistently better than, well, ever so I figured it was just a reaction to so much going on. But then over breakfast he did it again. He didn't fall asleep so took him to school anyway. However, Seth had another seizure, fell asleep and when he woke up he immediately had another seizure and then went back to sleep. The school nurse checked him out and said that he was okay but that we should go to hospital.

Seth didn't go back to sleep but spent the afternoon in a state of drowsiness, every so often having another fit. Because they weren't causing him any real problem and he wasn't showing any other signs of ill health they let us go home and ever since then I've been in a state of anxiety. Miraculously they tailed off and Seth slept really well. Today I think he has had some buzzing in his head because he's given a strange moan once or twice but nobody else would have even noticed anything. His colouring is still off - flushed cheeks but pale underneath with dark smudges under his eyes. He's been like that since he got the hospital yesterday.

I think it might be time to start the anticonvulsants. I'm told the dose would be the very lowest possible and that we'd work up to it slowly - I'm desperate that he doesn't end up sedated. But I can't bear that he might have buzzing going on his head (I say buzzing because I really don't know what's going on in there) and if he's going to be drowsy from fits then what's the dif?! I just don't know how we got here. One minute he's completely fit free and 2 weeks later drugs seem the only option.