Mixed Blessing

I heard that yesterday was one of the hottest days of the year so far. Being by the coast, we always have an easterly wind that is refreshing, but even with that it was hot in our garden yesterday. As heat is a key trigger for Joshua’s seizures, sunny days, though beautiful, are always a mixed blessing for us. Everybody loves the blue skies and I try to dress Joshua in as cool clothes as I can ; He has been wearing shorts at school all this week and will probably now be dressed in them until September.

We did our weekend Tesco shopping spree in the morning, before it got too hot. He was happy to push the trolley and not try to lie down or run off, so we managed to pick up everything on the list this time. He sat at the end of the till while I loaded everything onto the conveyor belt and it was only as I had almost finished packing that he stood up and dashed towards the exit, so I had to take chase. I am sure the weekend checkout staff are highly amused by our antics each week.

We had lunch when we got home and I made a lasagne for my visitors today, while Joshua chilled out in his den enjoying music. He dozed off so I took the opportunity to go outside and cut the grass, leaving the back door open, so that he could find me and I could check on him. I had almost finished. when Joshua appeared so I brought a picnic rug outside and the puppies, and we played and lay in the sunshine for a while. The pups clambered all over us, it was their first time in the back garden and they were delightful.

We came back indoors when we got too warm and Joshua went back on his settee in his den, which stays nice and cool thankfully. I was making a drink in the kitchen, when I heard a bump and he had fallen off the settee and rolled onto the floor, having a seizure. I sat with him, while between seizures he would smile , wave or give me a little thumbs up, before another would strike. I had his emergency medication ready, but thankfully they slowed and ceased without needing to administer any, as two doses within 24 hours of each other would be a bad weekend.

I feared that his seizures would wipe him out for the rest of the evening, but he had a small nap then enjoyed his tea. He has begun to run his own bath these days – only forgetting the plug! – so he indicated that he wanted a bath by running the taps , so he had a coolish bath before our guests arrived. He was in his pyjamas and his eyes continued to roll some more, with seizure activity on and off all night, but he joined in the dinner party and stayed up with us until 10 pm.

I have checked the weather forecast and it looks like sunshine and high temperatures for the rest of the week too, so school will need to be ready with their best cooling him down procedures. The summer term is always a problematic one for him, but at least we are prepared for it.IMG_5467 (002)


Electrical Storm

Some days, the threat of seizures hangs around Joshua like a bad smell all day and so you are on edge, just waiting for them to land properly. He came downstairs at 6.30 and he had a series of small seizures after breakfast, but they stopped on their own, without any intervention. They felt like warning seizures,as though they were building up to the main event and so I watched him like a hawk until he left for school. As often happens after seizures, he became loud and giddy, which can be another warning sign. We were both watching out of the kitchen window for the taxi to arrive, as the dogs barking had given us a false alarm while he was getting his boots on. As soon as he saw the taxi, I was gathering his belongings together, when he ran to the door, opened it and ran to the taxi. Normally I lead the way, holding his hand so this was quite an enthusiastic departure for him.

I warned the escort and taxi driver about what had happened already and what he might be building up to. I expected a call from school all day but , thankfully, it never came. I met him after school, as Yorkshire Grandma is on holiday this week, and the news was that he had been ” a monkey ” all day. The diary reported that he had done some dozing in the afternoon, and when he had woken, he had lashed out for no apparent reason. I suspect that his mind was confused with electrical activity. When he got home, he rushed into his den, once his helmet and boots were removed and we had enjoyed a hug, and he curled up on the settee. Joshua clearly still did not feel right and so I allowed him to rest some more before serving up his meal. After around 45 minutes, he came looking for me and his food, unhooking his pinny off the back of the kitchen door, indicating that he was ready now. Sure enough he ate everything that he was offered.

Poor Joshua, I think this black threat of epilepsy had followed him around all day and into the evening and it had still not delivered its blow by bedtime. I took his baby monitor to bed with me but as far as I am aware, no big seizures have yet arrived. Hopefully with a decent night’s sleep, his brain will re-set, giving him more peace today, as that state of red alert, having an electrical storm in your brain, must be exhausting.