Day +42 and +43

Photo of the day




THE BROWN TEAM!
Tim and Jesse happily watching Raven...





Hello everyone! OK, OK, OK...here is the latest blog entry. Sorry it is late, I was very tired last night. Yesterday was a good day. Jesse wasn't sick at all! He ate all day, very small quantities and was in a good mood. He had a fantastic lesson! His teacher, the lovely Louise, brought up an interactive web cam that meant he could see the GOSH schoolroom (which of course he can't go to). They had some top chefs visiting and they were doing ready, steady, cook with the kids. They all gave Jesse a wave, and he waved back. Then one of the chefs brought up a beautiful box of fruit sushi they had made which I had for lunch! In the afternoon we went out and met Maggie. We walked round Russell Square, saw the fountain and then we sat outside Starbucks, but the sun went in. We were hoping to see Granny too but she couldn't get away, I know Jesse would really like to see her soon. We did four puzzles yesterday, two Jesse did all by himself and most of the other two. We had a nasty moment when we thought we wouldn't be allowed in the playroom because Jesse has adenovirus in his wee, but actually infection control says he just has to wash his hands...Phew!

In the evening I escaped for a delicious Italian meal with Venetia and John. We went to an Italian restaurant on Southampton Row that hasn't changed since the 70s. They even have a sweet trolley! It is very funny and strangely comforting...It was great to get out and I was feeling very positive, as ever they were very good company!

Within half an hour of coming back, Jesse was awake, it was the start of a very exhausting night. It felt like we were awake every hour for a wee or a poo or a drink or observations. In six hours he pooed nearly a litre (having done hardly anything all day). It was very disappointing. Jesse woke at eight this morning and was sick immediately. The nurse had given him fizzing phosphate and penicillin syrup (when he has been having a crushed tablet up to now). So he threw up the medicine and didn't feel great. He wanted breakfast but I persuaded him to wait. So we went for a walk...this time 12 trips to Hedgehog ward and back. I was exhausted! But then Jesse became very weepy, I'm not sure whether it was hunger or exhaustion, but he just started crying non stop and there was nothing I could do to console him. So I just left him and eventually I moved him onto his bed where he fell asleep. He missed his lesson. He woke at 11.15, sat up, and said he wanted to go for a walk. from then on he has been in much better spirits. He hasn't been sick yet and has eaten a little. Red Ruth came by at 2pm and we were able to go for a walk and a sit outside Starbucks. But even though we were in the sun, the wind was bitter so we couldn't stay out long. Nick Goulden, out current consultant, and the team of doctors are very pleased with him. They have halved his steroids today, and will keep him on this for at least another week. I pushed them to give me an idea of when we might be able to come home. They best they could do was at least three weeks, I was expecting longer so was quite pleased, but this is dependant on all going well, which of course it may not. Tim has arrived to see Jesse so I will stop now and possibly update later.
Love
Claudia
PS Thank you for the jokes Charlotte, Gaby, Lily and anyone I have forgotten, Jesse is in much better spirits and so he was roaring at them last night!