We had hoped to go and watch 'Spooks' at The Odeon', but unfortunately it was the one screen that didn't have a wheelchair space. We watched 'Far from the madding crowd' instead, not quite the same and although we love that story I found the film a little disappointing.
We had some nice meals out with Chloe and Tom. We went to 'Little Bay', a lovely Italian restaurant on the seafront which we try and visit every time we go up. Chris managed a little soup and ice cream, though the soup did cause some problems for him later even though it was puréed. They have a resident opera singer on a Thursday night. We aren't really into opera, but the singer comes round to each table. After we got over the embarrassed giggling, she sang to Chris and held his hand. It actually reduced him to tears and it was a very moving moment and it certainly became a wonderful memory for him. We had to go to 'Cremes' an amazing ice cream parlour in Brighton too. I think Chris though, may be getting a little fed up with ice cream.
At the hotel meal Chris just settled for ice cream yet again while we ate our main meal. He just doesn't fancy anything else and can eat so little anyway. I shall never get used to eating such lovely food in front of him, it just feels so very cruel.
My brother popped down to see us at the hotel as he lives near Horsham and it was nice to catch up and for him to see Chris. It is hard for us to visit them now because of access.
The trips up and down both went well, though they were pretty quiet for both of us as Chris couldn't hear me very well over the noise of the engine.'Patience' our SAT Nav, was very good though and made sure I didn't get lost.
It was lovely to see Chloe and meet her boyfriend Tom. The time went way too fast as always.
It is quite an effort to get away now with all the equipment needed for Chris. It wasn't easy trying to find out why Chris's PEG alarm was beeping and showing a blockage and not ideal when you are parked outside of a petrol station. Thankfully I managed to sort it eventually. We also made sure that Chris wore slippers on the way home and not shoes as his heels were quite sore after the trip up. There are so many, many firsts with this disease.
It was lovely to see Chloe and meet her boyfriend Tom. The time went way too fast as always.
It is quite an effort to get away now with all the equipment needed for Chris. It wasn't easy trying to find out why Chris's PEG alarm was beeping and showing a blockage and not ideal when you are parked outside of a petrol station. Thankfully I managed to sort it eventually. We also made sure that Chris wore slippers on the way home and not shoes as his heels were quite sore after the trip up. There are so many, many firsts with this disease.
We managed to read the local paper with our MND story in when we got home and Chloe has had a wonderful response after the MND association shared her song. We are not sure if her song will sell many copies, but it is Chloe's way of doing her bit to help her dad in her own way.
I will post the link to the article in case anyone wants to read it.
So we are back home and still taking life one day at a time.
