I knew from the night before that yesterday was not going to go to plan. I went to bed at 11.30 and Joshua was still awake, having been in his bed for two hours already. He kept getting up and swapping beds every ten minutes, and was really restless. After the third bed swap, I smelt that he needed changing so I hoped that was the problem and once he was more comfortable that he would settle down. But the restlessness continued; he even headed downstairs at one point asking for Bix. So I fed him Weetabix and hoped that it was hunger keeping him awake. We stayed downstairs for a while, I used the wee small hours to top a cheesecake that I was making. At 2.30am, we headed back to bed and finally he fell asleep.
But at 5.30 am, he was up again and heading downstairs so I knew what was coming , this was not normal behaviour. I gave him his medication and settled him in his den to watch ‘Finding Nemo’ while I made mushroom stroganoff next door in the kitchen. I kept checking on him and at one point he had an enormous bowel movement and made a mess. So I stripped him down and cleaned him up as best I could, but ran the bath as it was the only solution. So he was in the bath around 6.30 am, when the seizures we had been waiting for finally came. Having got him clean, I let all the water out so that he was easier to lift out of the bath between seizures. Thankfully he could still stand and cooperate , so I walked him to his bed, where after 5 minutes of fitting, I administered his Midazolam and watched him instantly relax. I snuggled into bed next to him and I nodded off too once I had seen that the medication had done its job.
I had already cancelled my Mermaid swim at 2.30 am, when I knew that I would not be getting up at 5am after so little sleep, but that was disappointing as I love those swims. I was hosting lunch for two friends, one who used to take care of Joshua at his Children’s respite. We had arranged this gathering months ago. I messaged them both to advise them what had happened and that we would not be on sparkling form but to beg them still to come. I did not want to let epilepsy spoil our plans, it wins too often and I was adamant that we carry on as best we could. Both friends work with disabilities and are familiar with Midazolam and its after effects so I knew they would not place any undue demands on Joshua and I also knew that they would be the tonic that he needed to see, to brighten up his already rubbish day.
So they agreed to still come, Joshua stayed in bed all morning, dozing, so I was able to finish off the cooking, lay the table and tidy around for them coming. Joshua emerged about 11.30 which was great timing so I could dress him and he was back on the settee in no time, washed out but awake. When they arrived there were hugs and laughter and lots of catching up to do and Joshua joined in then drifted to his den, then came back again at his will. He probably joined in the party as much as he would have done without Midazolam. He ate some dough balls followed by trifle for lunch, which was pretty good going. He decided to go and listen to music in the lounge with his Dad, rather than listen to three ladies chatting and laughing away. We had a great afternoon and I was so pleased that I was not tempted to cancel it. I would have been really fed up if I had done and we would have had a mountain of mushroom stroganoff and lemon cheesecake to eat too. They left 4ish and I loaded the dishwasher then had a nap.
I was still smiling when I woke up and I was relieved that I had not let epilepsy spoil our fun, again.