I wrote yesterday morning about how we were looking forward to a warm day but that we would need to take care with Joshua, well my day did not turn out quite as expected….
I took Joshua his Weetabix at 8.30am and although he greeted me, he was staring at me oddly. He ate his breakfast in bed greedily, but kept having absences as he ate, disappearing in and out, staring and going still in between mouthfuls. I went downstairs to wash up his cereal bowl, telling him that he could have another ten minutes in bed. But from downstairs, I heard a thud and he had fallen out of bed onto the carpeted floor below. He had soiled himself, which latterly has become the precursor to seizures, so I helped him up and began changing him, but while standing up to be cleaned up, the full seizures took hold. So I was juggling baby wipes, a lot of mess and a young man who was trying to fall over again. I hurriedly got him as clean as I could, before allowing him back into his bed, just in a nappy.
My heart sank, knowing that my planned Friday was running out of control and I rang daycare to warn them that we would be coming in late or potentially, not at all. They were understanding and sympathetic and we agreed that, even if he did make it in, that swimming might not be the best idea after all. I returned to his room where the seizures had stopped but he was worn out and wanted to go back to sleep, so I let him do what he needed to do. I left him in peace but made regular visits to his bedroom to check on him and watched him from downstairs on our baby monitor. I busied myself clearing out two kitchen cupboards; for weeks now things in my baking cupboard have been falling out when I opened the doors, so that was very satisfying. When Joshua was still fast asleep at 11, I called Daycare back and explained that he would sadly not be coming in. They wished him well but sounded as disappointed as I was.
I took the dogs outside and I hung the washing out in the garden, so I saw something of the heatwave, although with us all morning it was muggy, as it was cloudy yet warm but we did not see any blue skies until the afternoon. I had been outside and when I came back in, a fully naked Joshua was standing in the snug; he had shed his nappy and had been looking for me. He enjoyed some toast then lay down on the settee to watch Nemo in his den. I left my husband in charge from 1pm as I had a hair appointment, so I had a short break from my domestic duties. I began making us all lunch when I got back but Joshua’s seizures began again while I was cooking his pasta, so this time he did need his rescue medication, Buccal Midazolam, in order to make them stop. I had just enough time to feed him some pasta for lunch before he needed to lie down on the settee, knocked out by the medication. He stayed there, dozing on and off all afternoon, not even trying to move. So I busied myself in the kitchen again, where I could watch him in the snug, by cleaning our picnic basket in readiness for a planned picnic today, as it has not been used for some time.
It is the first time that Yogi, our border collie puppy, had seen Joshua’s seizures and he was very concerned about his new friend. When he was lying on the settee, Yogi kept trying to lick his face and hair. Even as a young dog, he sensed that all was not well and he was trying to get Joshua up again, he knew that this horizontal Joshua was not normal. We had to take him away in the end, as he would not leave Joshua alone. This behaviour bodes really well and suggests that they will be great companions together in the future. I loved how sensitive Yogi was as usually puppies are pretty self-centred and are only seeking fun.
It was not until after tea, around 8pm, that I wheeled him in his wheelchair out to his pod for some fresh, cooler air. Joshua seemed happy to see more than just the settee and said ‘thank you’ in a little voice when we got to the pod. We sat there admiring the evening views, playing ball with the dogs and eating Ritz crackers for about 45 minutes, which was a perfect way to end what had been, quite frankly, a disappointing day. You would not be able to tell from Joshua’s face in this photograph of him at the pod, that he had endured such a dismal day, feeling unwell. His face shone like the sunshine and that is one of the many reasons why I love him, he does not let a small thing like epilepsy break his spirit, or spoil his fun.