B positive

I don't want to make this a political blog but, I'm compelled to point this out. Today, dozens of people have taken to the streets to campaign for access to a drug for some CF patients. Hours of planning, effort, media relations, interviews led by the CF Trust. Putting an economic value on something so potentially life-changing is obscene but, for those inclined, the cost is around £120,000 per annum, per patient. A lot of money, yes. The powers that be have declined access to the drug on cost / value grounds. Also today, our government has found an extra £1bn to tie up a survival deal of its own. That's £1 billion to retain power for the next 24 months. Elsewhere, theBritish Navy's new - and only - aircraft carrier is preparing for its maiden sea trial voyage. This cost over £3bn.   These are political decisions based on perceived priorities. I'll just leave that there.  

A round 6 weeks ago one of E 's fortnightly cough swabs identified pseudomona aeruginosa, this  wasn't good news for Eloise. Long short story - E was given a 6 week course of an additional antibiotic (ciprofloxacin) and we started our nebuliser journey (nubulised Colomycin).  I ain't gonna lie, E HATED the nebuliser at first. It was stressful and very time consuming. But we formulated a plan, persisted and E is now such a star.  We put Little Baby Bum on the TV (yes, this really is the name of a YouTube channel full of nursery rhymes!) and turn the volume up so she can hear it over the sound of the nebuliser.  It works a treat! Immediately afterwards she gets a few chocolate buttons (bribery & distraction!). We have to do this for at least 6 months. Fingers crossed it zaps the bug in her little lungs. Thankfully treatment has come a long way - fingers crossed it continues to do so! The oral antibiotics came with their own restrictions...no dairy 2 h...

I'd be back in work for about two weeks after the early arrival of E, when I received the call from home and everything turned upside down. This was 15 months ago. A familiar story to many, the health visitor knocked on saying that the routine heel prick test had revealed a suspected case of CF. Before grabbing my bike and blasting home - very understanding employee - I quickly searched online for CF and found the CF Trust website. The CF Trust homepage The only thing I can really remember was the phrase 'life-shortening'. Our journey had begun. The next day we found ourselves in RMCH talking with a group of strangers - who were all very nice - they were explaining the treatment protocols and the situation. They explained how treatment had come on leaps and bounds in recent years and that there were many reasons for optimism. We also had to put E - who was more of an 'e' at the time weighing about 6lb - through a sweat test. The 'gold standard'...