Grace finished IV's yesterday. Its been a bit of a week, and she only managed to do Tuesday at school.

Monday was rough, we went horse racing at Warwick on Sunday and Grace ran about all day, its nice to see her running around and climbing on things, but I knew that she would wear herself out, and true to form on Monday morning I couldn't get her out of bed and she was very teary. She returned to school Tuesday, but her teacher said that she had a few grey episodes throughout the day.

On Tuesday evening we had tummy upsets again and she was very teary saying that she was just so exhausted she couldn't believe it. I have since read a thread on the CF forum that meropenum has caused others the same problem. Also the fact that her dose has gone up probably adds to the effect. So there has been no school Wednesday and Thursday morning when her port access was removed, she got into a terrible state as pressure sore had developed without us noticing and it was positively scabbed over the white plasticky square bit that holds the needle in place and she ensured me that it had positively ripped out her insides along with the needle, resulting in a very funny turn and another grey episode and lots of tears.

Today we thought, what the hell, lets make a whole week of it and do gastrografin today as its been due so that she can hopefully return to school on Monday ready for the week and not having anything else to upset her. Grace is not normally like this by any means so I don't think there has been any shirking involved even though she doesn't tend to complain about anything for the rest of the day, but she is then able to just sit around and do nothing much. I suppose it is different if you have to physically force yourself to join in school activities if you feel like crap!

I'v had a little flutter this week as it has been the Cheltenham festival and had 3 winners so far, although not great prices, infact I did better on an each way 2nd called Miko de Beauchene. I have also picked a horse in every race with a stake of £20 and the winner over the entire festival wins the prize money which stands at £140

A win secures 10 points and 2nd 6 points and 3rd 3 points - I currently have 38 points and am in 3rd place, my husband is in first place obviously.

I was meant to start Salsa classes last Monday, but being the busy week that it has been and also having another lodger back at home, I completely forgot, and the very nice people at the local sports centre have agreed to let us start this Monday, so watch this space.

On the subject of hectic weeks. The instruction manual to the eflow reccommends that the 'head' be boiled after each use, Grace has 5 nebulisers a day, she has Dnase at 4.oopm which isn't a problem because thats a once a day dose and can only be used for dnase (some enzyme type reason thingy) but the hypertonic and tobi are done through the same head. This means that it needs to be washed and boiled before and after physio and its meant to have 4 hours drying time.

4.00pm - dnase
6.00pm - hypertonic saline
7.00pm - toby

Followed by washing and boiling again to get it dry in time to take up to bed with us ready for hypertonic at 7.00am and toby at 8.00 am before school.

My point is, is this total rubbish? or does everyone do this between nebs? I feel like i'm forever putting things in and taking them out of a saucepan. I'm going to buy a steam sterilizer but I still think there is an issue with the drying times.