Patience is a virtue

When I look back to Joshua’s Annual Review at school in June, there were just two actions that we wanted to pursue and both have been achieved this week : I heard from the Continence Nurse on Friday that we will be allocated the nappies that I have been asking for, and buying myself from Amazon, for overnight. It has taken almost five months , of meetings and trialling alternative products, but finally we have got what I was asking for.

The other priority was for respite care and Joshua went to his new provision for the day yesterday. He did not stay overnight, his first experience was to be a full day from 10am until 6pm, so he had two meals with them and met both the staff and children who he will be sharing weekends with. The original plan was that me and my husband would drop him off and have the day out in the city together, but as I have a cold with  earache and I still have a throat that feels like I have swallowed a hedgehog, I could not face  a day out in the wind and rain. So I took him the 75 minute drive to his new provision. He settled in immediately, while i was unloading the car, he walked off into the lounge and sat himself down without a backwards glance!

Unfortunately, as I was completing paperwork, he had a seizure within ten minutes of arriving, and a  member of staff called me over. I sat holding his hand while three members of staff observed and timed the seizure. It was a gentle one and he closed his eyes afterwards. While I was of course disappointed that they had witnessed one so soon and that it would be likely to impact on the day he was going to have, I was also pleased that I had been there too to answer their questions and to see how attentive they were. Once I had seen him recover, I left them to it and drove 90 minutes home again.

We had planned to go back in the afternoon together but I felt awful and spent all of our free time, asleep on the settee. So My husband set off at 3.30 on his own to collect Joshua.I was sad not to go too, even though it was the sensible thing, and I instructed my husband on the questions that I needed him to ask. Thankfully when he brought him home, there was a diary that filled in the gaps in information plus photographs of Joshua playing the guitar!

He had had another seizure during the afternoon, so they saw him at his worst. As a result, he did not eat or drink while he was there but he seems to have been settled for a first visit. Next month, he will go from school on a friday night and we will collect him at Saturday tea time, so we will have another go at the city break then.

Yesterday was not quite the respite that we had in mind, but it was part of the slow journey to achieve the outcome that we want .

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