Breaking news -I have had a lie in!

Joshua is having his first full weekend at his new  respite provsion and I slept in until almost 9am! That is unheard of, I had 8 hours sleep and I still cannot believe that it was light when I woke up. As I opened my eyes, a flock of geese flew overhead honking as my wake up call. I felt sad yesterday morning packing up his bag for three nights away and sending him off to school, teling him repeatedly how much I loved him and that I would see him on Monday morning, as I am pretty sure that he does not understand time or days of the week.

His school taxi was to pick him up at 2pm, just the same time as Father Christmas was due to arrive with presents for the the whole school. So I asked that he was pushed to the front of the queue before he left but apprarently he was underwhelmed by the experience of meeting Santa. He then had a 90 minute drive to respite, which is a faster journey than he had experienced last time.

I called at 9pm for an update as I did not want to hound them but I was delighted by what I was told : That he had eaten his tea and drunk a good drink – both of these have been hit and miss when he has stayed away before -,  he had asked for ‘cake’ for pudding and been rewarded with a homemade yule log! – so they know he can speak all be it a limited vocabulary, but cake is a favourite word. He had joined in with games and had danced and giggled and had only gone to bed at 9pm. The only negative was that he had refused either a bath or shower, biting his finger in protest which he does when he is upset, so they did not push it.

I was so happy to hear all of that news and I hope that he has a good day today and tomorrow too. Today is the month anniversary of his last tonic clonic seizure, so I am hoping that he does not break the calm while he is away. As I was told yesterday, even when he does finally have another seizure, we will always have had this month with none, showing that he can go that long. I recall epilepsy nurses telling me in the past that it was cumulative as the brain gets used to not having seizures, so the fewer you have, then the fewer you have!

So Iawake this morning, more rested than I have been for a long time and full of hope and festive cheer!


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