Hello all
Posted: 27 Jun 2014, 18:30Sorry I didn't get on here last night. We got home about 6.30 then I unpacked, Tim went to get a Chinese, Luke had a bath and then at 9.00pm we realised the hospital hadn't given us all the medication back. So we had to contact 42, the next weeks meds were kept in the office, the office was locked 
Heaven knows why they keep the office locked and don't allow the senior on duty to have a key (paranoia I reckon). So then I had to go over to collect it and as they had a lot left from last time they hadn't ordered Luke's Bisacodyl, which we were desperate for. So I then had to go and find an all night chemist. So I got home about 10.30pm had a bath and went to bed.
Last week was actually quite nice. It was nice spending time with Luke without worrying about his seizures. That said I still didn't cope with his cluster on Weds very well. Monday 42 provided staff from 9pm but Tues and Weds from 5pm so we actually had two evenings to ourselves which was nice. We stayed in the hotel Mon and Tues, which was very handy. We went to Walthamstow to the house Weds. It was nice having a garden to sit in and a bath. We went to find somewhere to eat and there is nowhere in Walthamstow, so we brought stuff from Lidl. The house was slightly grubby, but we had been warned it was. Typical youngsters house, no time to clean, too much fun to be had. We just bought cold stuff as I couldn't bear the thought of looking in the oven. Louise had cleaned the bath so that was ok
And Lou and Nige our friends are so lovely. They had left us a basket with biscuits, pringles, olives, a bottle of Shiraz, some beers from the brewery her son works in, a couple of bottles of cider, lots of chocolate.
So yesterday they said they had all the information they needed and we could go. The problems was three nights of no sleep, and all the Benzodiazepines from the day before caught up with Luke. We couldn't wake him up. I decided to go back to the house and pack and strip the bed and then come back. But the Victoria line was suspended. I tried to find an alternative but it was too long winded, so I went back to the hospital and we drove up there afterwards.
Oh and we travelled back with an additional passengers Darren the rabbit. She (yes despite being called Darren) belongs to Mo, one of the housemates. She is only about 11 weeks old. I said I would look after her whilst they were at Glastonbury, but what should I do if we got sent home early. We'll cross that bridge when we come to it, they all kept saying. So yesterday we discovered there was no bridge
Go and ask the neighbours on the right, they seem nice. She didn't speak a word of English, she was Eastern European and I was trying to explain and all she kept saying was "but I don't have their rabbit" So then Louise text her son who said just stock her up with food and water she will be fine. Well given that they gave her food and water before they left Weds morning and there wasn't any left by 6pm there was no chance it would last 4 days. So Louise said "could you bring her home?" Mo wasn't happy, but as Lou said they should have thought of all this before they went off to Glastonbury. So she is home here, but only until we can find a way of her going home after Monday. Luke was fascinated to travel back with a rabbit 
NO she is not staying. I actually don't like rabbits much, they look too big to be in hutches. So I am not at all tempted to keep her, I just couldn't have left her.
Heaven knows why they keep the office locked and don't allow the senior on duty to have a key (paranoia I reckon). So then I had to go over to collect it and as they had a lot left from last time they hadn't ordered Luke's Bisacodyl, which we were desperate for. So I then had to go and find an all night chemist. So I got home about 10.30pm had a bath and went to bed.Last week was actually quite nice. It was nice spending time with Luke without worrying about his seizures. That said I still didn't cope with his cluster on Weds very well. Monday 42 provided staff from 9pm but Tues and Weds from 5pm so we actually had two evenings to ourselves which was nice. We stayed in the hotel Mon and Tues, which was very handy. We went to Walthamstow to the house Weds. It was nice having a garden to sit in and a bath. We went to find somewhere to eat and there is nowhere in Walthamstow, so we brought stuff from Lidl. The house was slightly grubby, but we had been warned it was. Typical youngsters house, no time to clean, too much fun to be had. We just bought cold stuff as I couldn't bear the thought of looking in the oven. Louise had cleaned the bath so that was ok
And Lou and Nige our friends are so lovely. They had left us a basket with biscuits, pringles, olives, a bottle of Shiraz, some beers from the brewery her son works in, a couple of bottles of cider, lots of chocolate. So yesterday they said they had all the information they needed and we could go. The problems was three nights of no sleep, and all the Benzodiazepines from the day before caught up with Luke. We couldn't wake him up. I decided to go back to the house and pack and strip the bed and then come back. But the Victoria line was suspended. I tried to find an alternative but it was too long winded, so I went back to the hospital and we drove up there afterwards.
Oh and we travelled back with an additional passengers Darren the rabbit. She (yes despite being called Darren) belongs to Mo, one of the housemates. She is only about 11 weeks old. I said I would look after her whilst they were at Glastonbury, but what should I do if we got sent home early. We'll cross that bridge when we come to it, they all kept saying. So yesterday we discovered there was no bridge
Go and ask the neighbours on the right, they seem nice. She didn't speak a word of English, she was Eastern European and I was trying to explain and all she kept saying was "but I don't have their rabbit" So then Louise text her son who said just stock her up with food and water she will be fine. Well given that they gave her food and water before they left Weds morning and there wasn't any left by 6pm there was no chance it would last 4 days. So Louise said "could you bring her home?" Mo wasn't happy, but as Lou said they should have thought of all this before they went off to Glastonbury. So she is home here, but only until we can find a way of her going home after Monday. Luke was fascinated to travel back with a rabbit NO she is not staying. I actually don't like rabbits much, they look too big to be in hutches. So I am not at all tempted to keep her, I just couldn't have left her.
