When we arrived at Bluebell we believed we would have more time. Leeds gave us enough medication for five days and after this we were told that Ethans heart would last about 3 days without it before he passed. Unfortunately though, the canular that supplied him with the medication came out on our first night there. It was at this point we knew that our time was running out. We decided it was right for us to stop people from visiting us. This was an extremely difficult decision but we needed our time with him. We needed to make memories and hold him a much as we could. So we spent time with him in the sensory room at Bluebell, laid in bean bag chairs with soothing lights and gentle music. We played Jack Johnson albums to Ethan because it calmed him. We read books to him and took him for stroles around the building. I was able to breast feed, change him and hold him whenever i chose. Something we couldn't do at Leeds In the evening we bathed him. For the first time we were able to take care of him as parents do. We found it amusing that he slept through his first Bath, and his second he stopped crying as soon as he got in the water so i know he liked it. As we came up to our third day with Ethan i became aware that his health was deteriorating. His heart was beginning to fail him and every moment with him was precious. The night before he died, i did not sleep a wink. i sat with him in my arms and watched him sleep nursing him when he woke. On the day he died i spent the morning reading stories to him and taking his foot prints. The last story was that of Peter Pan. At the time i did not think about how ironic it was, that he too would be like the boy who never grew up. This became an important memory to me and we chose to have imagery of peter pan on Ethans coffin. It was at 12.15pm Ethan began to cry and gasp for air. For a moment he stopped breathing and he turned blue. I rubbed his chest and his breathing was shallow. I knew now was the time we were losing him, so we sat in our room and held him. It is that he was in my arms in his final moment that i find comfort. i told him i loved him and we read 'i love you as big as the world' to him. He looked into my eyes for the last time and drifted off at 12.30