Isaac is well. Chest. Tummy. Everything. Best start to Autumn yet I think...
Little Rosa less so. She has just started pre-school after a life of mainly being at home or with Grandparents, so we can pretty much write off the next year for her bug wise. It will be one after the other for a while. She is such a darling, and despite being the clingyest babe ever, settling into this new world of hers has gone better than expected.
Anouk, our gorgeous girl. If there was an award for sweetness, she would be a gold medalist. Examples being these notes and gifts left on our pillows (just one of many sweet things...)
I am really excited about how National Transplant Week went. I posted daily about this, and the buzz on my FB feed was so much greater than other years.
We have escaped hospital for a month, and following my huge disappointment about the clinical trial, this is very good timing. I know it sounds ridiculous (as he can't join the trial as he is currently TOO WELL) but this is still bittersweet for me. It would just be so good to feel like we were fighting CF, rather than just managing it. Which this drug could do. Maybe. So the wait continues.
Tonight I am sad. It's not my sadness to share. But a friend is going through the unimaginable. Knowing so many people now who are going through such hard times (because of CF usually) I sometimes feel a little numb to it all (I think I have to). But this is raw, and feels so so unfair.
I hope you are having a better day.
