Saturday 25 December 2021

Feliz navidad

It’s Christmas, and.... Isaac is well!!! Not sure what 2022 will hold, but I’m taking this one as a win. 

As I walked the dog home from visiting the grandparents earlier, they took a detour simply to pass me shouting ‘bus wankers’ at the top of their voices with their Dad (...terrible TV joke, but had me in stitches). 

Wishing you all a healthy, happy Christmas. We miss many of you aplenty. Apologies for the lack of cards, yet again. I’m saving trees but sending love x 

Our beautiful, funny, cheeky... and frickin adorable ones. I am hugging them extra tight this year, thinking of those who sadly can’t. Love, love, love x 















Tuesday 21 December 2021

A merry little Christmas

.... we wish you all! 

Isaac is COVID boosted, which is a present enough for me this Christmas. 

* Thank you to everyone who has been vaccinated, again, and again and again, not only for their own health, or their families, but to help protect those more vulnerable in society. It makes a huge difference to people with CF, and many other conditions. If not for yourself, then consider it volunteering for those in need, via needle * 

Isaac’s third booster, despite being Pfizer again, like his first two, resulted in fever and sickness. It seems to be waning now, on day four.... unless of course, it’s not side effects, but CF infection peaks... always hard to say with Ise. Anyway, today has been better, and we still hope for a well and happy Christmas. While Anouk and Isaac are fully fledged teens, they, like us, still enjoy little Rosa’s Christmas innocence and energy, which adds a certain sparkle to Christmas which I miss as they grow out of it. 

Our annual raffle at work raised over £4,400 for the cystic fibrosis trust. This is our 16th year. From very humble beginnings of a few gifts from suppliers... to a huge event, including highlights from team scavenger hunts to a draw for prizes including noise cancelling headphones, a Hotel Chocolat Velvetier, Echo dots, to massage guns. Sophie and Gem... how far we have come!!! Thank you for helping me launch this when I still felt hollowed out. I hope you are as proud as I am of what it has become ♥️


Christmas lights 2021 with the kids, and our newest baby cousin, little Lyra ♥️














Friday 3 December 2021

Adulting

My child. Officially in adult care, at age 16. 

First day was exhausting, tests from 8am- 5pm, and then an emotional farewell to our beloved paediatric team when we dropped off presents and IV pumps. Isaac was great - speaking so much more to the new team, and being more honest about the treatments he is less compliant with (a decent amount of physiotherapy, mostly). Lung function was a smidge better. All the other tests (diabetes bloods, CF etc.) we now wait on. 

Our day in pictures... (apologies for the lazy post... more soon). 
Thank you for reading x 


New hospital, new CF ward, private rooms with ensuite. Not so bad. 



Caroline, our CF nurse for the last 16 years, and one of the kindest people I have ever met. 

Same site. New views. 



Doodles galore in hospital. 

Exhausted!