The kids are well. My head is well. Work is manic in a kind of 1001 things to do but I actually want to do them kind of way. And I am working with the loveliest people, and that means a huge amount to me. I am all about the people. My head may be less well soon as I am heading into 8 days of programme management training. Last time I had to do that amount of solid learning was way back for my degree (Psychology, if you're wondering. I am still wondering how I managed to pass). I'm not sure I can sit for that long, let alone listen, and understand, and retain any actual information! But I badly need to well in this.
Isaac is well enough to postpone clinic this week, while we await his next lab results. If the PseudoA has not cleared, we'll need a new plan, but for today, I will think positively. I will post soon about his attitude and compliance with treatments, as we head into these teenage years. It's been emotional shall we say. We badly need him well for holidays and the start of secondary school in September.
In the meantime, interesting article here on the use of inhaled Ibuprofen. Considering the widespread use and benefits of Hypertonic Saline (to us lay people, salty water) in CF now, when these already developed drugs come to light as a new therapeutic option, this is very welcome news in a world where NICE are refusing to fund precision drugs like Orkambi. For now at least. Which reminds me, if this petition can reach 100,000 signatures (...so about 80,000 more) it will be raised for debate in the commons. Any ideas on how to highlight this issue and gain that kind of support? Please message me with ideas!
Have a great day. Listen to this or anything from the Epic album . It always cheers me up x
