Isaac continues to do really well, post surgery. The headaches have gone, but his cough is slowly building.
Clinic today, and his lung function is slightly down on where we were just post-IVs, which is disappointing. That said, his quality of life is so much improved. He has started part-time work, with his Dad, as a builders labourer. The fact that he can now do three days a week, lugging things around, learning some carpentry and joinery on the job, and doesn’t come home broken is… massive.
These changes, we celebrate every day, and an even bigger celebration will be a holiday later this month. Our first in, years?
Cystic Fibrosis likes to throw spanner’s in the works when it can, and in this case, the search for travel insurance has been painful. Yes, he can walk 100m unaided. But, yes, he takes many more than 8 medications a day for his condition (to keep him well), and yes, he’s been admitted to hospital more than twice in the last 12 months. Many companies won’t even quote when you get that far. Finally found something which covers him, and is less than the cost of the holiday itself. I imagine if the worst does happen, transfer to hospital might be on a blind, constipated, three legged donkey, but needs must.
I’ve been involved in a few initiatives with the CF Trust lately, and if you’d like to hear me sounding about 12 and inappropriately giggling too much, you can hear a podcast here.
Right now, we will concentrate on keeping him as well as we can to travel. Have a great day x
Miro ❤️
