Today Grace wanted to go to school because its 'Children in Need' day but I could see that she was putting a brave face on from last night. Her port always gives her a hard time the first 48 hours after access and even after calpol she was whincing with pain (under her breath).

Anyway after her first dose of ceft this morning she was totally done in, all white and sickly and had to lye down, so she just couldn't manage school and admitted defeat, we also had to cancel taking Nanna shopping, and will attempt it again tomorrow.

I got a little panicky as they sent the ceft in 2g bottles and we normally get 1's or 1's and halfs. So we had to add 10ml of water and the draw off 7.5 and then dilute to 20ml.... easy for Mark but i'm not good at maths and I keep worrying that its wrong especially when she felt really poorly afterwards.

She is fine now and we seemed to have played every board game that we own and eaten tonnes of satsumas and watched christmas films on sky all day. We have also made lots of lil luvables bears with her bear stuffing factory - strange that she had it for christmas last year and only made one,and we have waited until now to finish making them.

Grace seems a little better in the last few weeks, maybe its the azithro, but it was good to see Dr S smiling yesterday and saying he was pleased. She still gets bouts of exhaustion however, and she has had 6 lots of IV's in 6 months, but her sats were 94 yesterday. We didn't get the opportunity for a lung function test and it was 46% last time, and that was with improvement, but she has to go back to the hospital to do them next Thursday and spend some time with the physio to get her in ship shape for her bronchoscopy on 26 November.

I don't want to speak too soon, but maybe the downward spiral has gone into reverse (fingers crossed)