Isaac is doing really well, frustrated in the heat, port accessed and unable to swim, but coughing much less. Bloods have been OK (the blood fairies come every three days to check his Tobi levels, as his kidneys can suffer from the toxicity). Angry earlier, he asked why he can’t have a transplant already. He is sick and tired of the treatments; as soon as his hour hooked up to the IVs is done... he still needs to do his nebulisers and physio. There is no holiday from CF treatments. In this heat he walks round, top off, port accessed and IV line dangling on his chest, a very visible sign of disease, but I’m proud he doesn’t care.
This weekend a little baby in our family gained his angel wings, far too soon. Little lion Leo. We are thinking of you all, Sian, heartbroken.
Some pictures from Wild Wood last night, basically a rave in the woods. A very welcome blow out, with some beautiful friends, without whom I would cope a lot less well. Thank you lovelies x
