Hey you.

Things are good here. Isaac is on some extra oral antibiotics (his lovely Cipro, which makes him so sun-sensitive he has a cute glow even in autumn) while we try and eek out some extra time before his next IVs. His lung function at clinic last week had dropped, but when we scrutinised the figures more, while his predicted % had decreased, his volume had increased, and it was only when we realised he had grown a whole 2cm in two months (!) that we figured out why (predicted lung volume/force is based on a number of factors; gender, age, height, weight). 

He is changing before our eyes, from our cute curly boy to our handsome man. And with these physical changes, come surprising mental ones too; I have found that my usual routine is becoming somewhat void of the levels of nagging previously required (um, wow!).... I make up his nebulisers, get out his tablets, prep his bi-pap and aerobika, he wonders down sleepy eyed, and now... he just kind of... DOES IT. There is still the occasional prompt (Deep breaths! Huffs! Neb!!!) but nothing on the scale of the last few years, and when I do prompt, it doesn’t result in a barrage of angry denials and arguments. In other words, he is getting on with his treatments and my life is feeling inexplicably easier, as feeling like a nag is a necessary but really quite shitty part of the role that we play. 

Honestly, however long this lasts, it’s like the best early Christmas present ever. When we holiday with friends and they saw his previous unlimited levels of procrastination, they would always ask us, why doesn’t he just get it done so he can get on with his day? And we would say, hell only knows! But finally, he seems to be getting this. So, CF friends, know that it can and does get better (at least at times). 

Some pictures from our recent happy adventures with some very lovely family. Love you so much guys x 

Feeling fortunate right now ourselves, but sending my love to so many friends who are having a much shittier time ❤️