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)


Trigger Happy

I think that I might have put a jinx on the sunny , warm weather and blue skies that we have been enjoying lately! This morning it is cold and wet, so Joshua will not be going to school in his shorts as he has been doing all week. Yesterday I sent an email to school to advise them that as heat was a key trigger for Joshua’s seizures, we are entering a difficult period for him. The 6th form at school are housed upstairs and it gets very hot there, with limited ventilation and outside space.

I asked that Joshua is kept as cool as possible by removing his epilepsy helmet and his boots, splints and socks too, when he begins to overheat this summer. I am confident that the risk of seizures is worse than the risk of him falling and hurting his head, as his seizures are less violent than they once were and he tends to be seated for them these days. Joshua rarely wears his helmet at home, only when he looks to be brewing a seizure, so it tends to be a precaution that is typically used at school and at respite. I send Joshua to school in his shorts on sunny days, so that his long, thin, white legs and nobbly knees are on show.

The last time I can recall Joshua overheating badly was at the school prom last July on a really  hot, sticky evening. Joshua was wearing his suit, including a waistcoat, and as he got hotter, he would not allow the staff to remove his jacket. When we arrived, he had a high temperature and so immediately I stripped him of his jacket and waistcoat. I removed his helmet and boots and we took him outside where there was a breeze and I waited with him, while my husband went to buy some Calpol. We sat in the cooler bar together and our droopy son gradually recovered and soon he was dancing the night away and we were the last to leave the party.

On holiday in sunnier climes, Joshua is most likely to be found either in the shade, or more likely, in the comfort of an air conditioned building. He is not a sun worshipper and has pale freckly skin that would burn easily if given the chance too. He will not wear a sunhat either, from being a baby, Joshua would not tolerate anything on his head. He wriggles away from his helmet everyday, and it only stays on because if the secure chin-strap.

So now that we have made these hot weather precautions, that has successfully scared the sun away. But should the sun decide to put in another appearance before September, we are all ready for it!