Olly and Nush

Today my daughter asked to watch the Olly and Nush cartoon again. She is 5 and beginning to understand a little more about CF. After all, it affects her hugely too. It reminded me how sweet it is (I can't take much credit, but was part of the focus group who brainstormed ideas for the film, and through a lovely supplier at my work, got the DVDs manufactured at no cost to the charity which was great). For anyone wanting a small introduction to CF, or trying to explain it to a child, it's worth a watch.... Click Here . 

CF sucks

Today he informed me that CF sucks.

This is not his standard response. He is actually pretty easy going, and very compliant with his meds, nebs and physio. But occasionally he says it sucks. He has to work so hard to stay this well, and there is still a decline in his lung function every year. Why? Maybe the results of the CT will tell us. In the meantime, yes, CF is not really a walk in the park. But on the otherhand being regulars at the hospital is a very humbling experience - there are always people worse off. And whilst he spends sometime each day doing stuff just to stay as well as he is right now, it's nothing compared to what he had a few years ago even, with cumbersome old Pari junior nebs and percussion physio, and compare that to years before, where people with CF slept in mist tents, had to exclude fat from their diets as they didn't have the enzymes we do now, and had their IVs on constant drips in hospital, rather than pushing them through a port in the comfort of your own home.... Of course he doesn't know or understand all that yet. So yes, CF does suck, but it could suck a lot more! 

I really do think we are the lucky ones. 

The doughnut scan

This week he had his first CT scan. I'm not sure if this is good, that he reached 9 years old before needing one, or that it's a bad sign that he needs this kind of investigation so soon. It was certainly less intrusive than the Broncoscopy (camera down into the lungs). He seems so grown up, our little pre-teen, but on the other hand so young. I guess all parents say that. Anyway, he was so good for his cannula, his first with just cold spray instead of magic cream (which always makes him red and itchy anyway). And he loved the scan itself. The only problem being that we were alone in the room, whilst the doctor folk were all in the other room behind a window, only speaking to us through the speaker. The only thing he needed to do was to lie still while the contrast dye pumped in and they scanned, but we just kept giggling. Proper shoulder jolting giggling. To be fair, he was better than me. Can you imagine being on a table and zipping in and out of a giant whirring doughnut and not laughing? Or maybe that's just us. We like to laugh.

We just have to wait for the results now. If they call and say they want us to come in, we'll know it's not great news.