Update

We have been having Silver Chain/Palliative Care Nurse and Dr visiting 3-4 times a day. Josh now has two subcutaneous lines in (under the skin), one to deliver morphine, anti nausea and calmative and another to give him some fluids as he is no longer able to swallow. Josh no longer wakes but has deeper and lighter spells of awareness. Anika summed it up well when she said "Josh can't open his eyes or move or speak now but he can hear me and he knows I am here holding his hand. We can talk in different ways now; with our hearts not our words." She is coping quite well but of course is a bit scared like the rest of us and also gets teary.

Josh's Uncle Danny and great grandad came on Friday night and left after lunch today as Josh had been asking for them before he lost consiousness. He gripped my hand tightly when they arrived. His breathing is laboured and mucousy but steady and his pulse is very strong though he has a high fever and is in considerable pain when moved to change his nappy. The doctor is confident his spine has now collapsed and we are keeping him still and holding his hand 24hrs so he is not alone. We talk about happy memories to him and he squeezes our hands every so often. The doctor feels he may yet last another day or two as he is so strong and doesn't give up.

Thank you to all of you who have emailed and messaged. I will SMS those of you whose numbers I have when Josh passes and will also let you know details of his Celebration of Life.

All our love and gratitude,

Hannah