Update 5

Back in Norwich again. Wednesday night. The family have gathered together for a huddle. Sammy is asleep, and Pampa, Sid, Rachael, Dave, Theresa and Simon are here. Curry on the way.

Joe had Pampa for company last night. Should say for breakfast really. Took him to the cleaners: Jaffle pie for dinner, chocolates, egg & bacon & sausage sarny for breakfast (which lasted him all morning, including the hour and a half he went back to bed to watch Star Wars, as he was "tired from breakfast": yeah, right), Jaffle pie for lunch. He had Uncle Dave on Sunday night (Burger King, midnight chocolate feast at bed time, egg & bacon roll for breakfast), and he's got Pete tonight, with no parental supervision (so no bath, lots of junk food). Joe knows which side his bread is buttered, and it's both sides and round the crust too.

Thanks for the replies to e-mails. We can't really always reply, but it means a lot to know everyone's thinking about us.

Further info on the night with Uncle Dave. Choclates were bought for midnight feast. Soon Joe asked what time it was: about 7. "I won't be awake at midnight, will I? I know. Let's pull the curtains round and turn down the lights and have the feast now!" He then tasted a couple of the mini quality street box, and decided he didn't like them. "I think the shops are still open downstairs, shall we go and get something different for the feast?" He says.

Have had a few beers now. Lovely night with family. Lots of plastic freeze boxes from the take away, to put meals in and freeze.

We're struggling a bit now to fit in all the offers of overnights, days out, visits and so on! We are so lucky to have so much support. The hospital are getting confused now as to who we are, as they have seen so many people come and stay or visit. Most children just have their parents there. Or just one parent. Joe has both, and his brother, and then when we're not there he's had 3 grandparents, an uncle and a family friend. And they say he's such fun that the rest of the family want turns now, too. So we're also lucky to have a lovely son (two of them).

Sammy went swimming and singing today. He liked his day of normality and so did Sue, so we are planning for them to spend every Wednesday here in Norwich.

Oh and Jack visited yesterday and, it goes without saying, beat us all at Monopoly. At least he until he lost interest and went off to play something else. Then Joe won. But he still hasn't beaten Jack.

However, Monopoly stops him talking about food. And nothing else does. He talks about it all the time. He is developing an interest in telling the time (so he can think about when his next meal is) and in adding money (so he can buy food). I think we'll get some menus and see if we can get him reading too. His Dextramethazone (?) has the side-effect of stimulating appetite and weight-gain (to which I can now say: No kidding).

Enough now. I'm rambling a bit. All still bright and cheerful in Norwich, as you can see. No photos this time though. Will have to get some pictures of Joe eating. Shouldn't be too hard: he spends a lot of time doing it (and the rest of the time talking about it).