From Dec'04 to Feb'05 was awful. Peter was very weak and slept alot of the time, although when he did waken he shared smiles with us. Peter loved his Daddy like no other! He's a real wee Daddy's boy! :) He loved to be tickled and get noisy Daddy hugs. He would go into fits of laughter even when his Dr was telling us he was too weak to last much longer. Peter loved to go by his own rules and this he proved time and time again. There were so many health professionals through the house with different opinions that they started to make me doubt if were we doing the right thing for Peter keeping him at home. To this day I live with a fear that we got it wrong! I know Peter disliked both the hospital and the hospice he loved being at home where he was sure about everything. At the hospital if a cleaner came into his room to clean he would stiffen himself up with just the noise of the bin bag being removed! You had to hold him in tight beside you and whisper or sing to him to try to keep him calm. Peter became very nervous when he was unsure of people, places or noise. I know he was happy at home but when your own Dr comes into your home and asks you "are you sure this is what you really want?" it places a doubt that never leaves you and on those million nights when you're on your own afterwards it revisits you time and time again. We had decided to nurse Peter at home and this is what we did. We did this for Peter. We just wanted him to be as happy as he could be and that we could spend every minute with him! It was heartbreaking watching our beautiful little boy get weaker but we had precious private moments in his bedroom, some that bring tears and heartache others that brought so much pride you thought your heart would surely burst! I am well aware it wouldn't be everyone's choice because they have told me...but for Peter I hope it was his. We nursed and cuddled Peter every day of those last weeks, I cuddled him beside me in his bed, with oxygen, his monitors and anything else he needed attached to him! I promised him I would be giving him a cuddle when he decided he needed to go...and I was!