A GOOD WEEK

As we have finally realised Oscar's body is trying to battle a skin infection, we have been using Manuka paint mixed in with his creams. He looks so much better and the last two nights he's fallen asleep straight away. Previously he needed patted until he drifted off anywhere between 9-10p.m. He  stays asleep for no longer than 1-2 hours but it's a positive sign that he's feeling much better. It's great to see some healing. Harry has had a happy week also. He seems quite comfortable and even managed half an hour with no bandages yesterday before scratching. We can see lots of white skin almost hiding underneath all the inflammation. We just have to be patient! He seems to be losing lots of skin again this week, big flakes instead of the breadcrumb appearance! Harry slept in his bed lastnight from 7-10.45 which is great for him. He then cuddled in with me and was restless for a couple of hours before falling into a deep sleep. I don't feel wiped out today so he must have slept reasonably well.
As an Early Childhood teacher I understand the importance of children's play. When children role play they are making sense of their wee worlds. Children love role playing shops, teachers etc. This week we watched our beautiful boys caring for Baby Daniel- A toy doll. They had turns of putting cream on him, wrapping him with bandages and socks. Initially Harry watched his brothers and towards the end he joined in telling them what to do and helped to pat the doll as it was itchy. Creams, itchiness and bandages are Harry's normality and seeing this played out I believe was comforting for him. In fact the next day after getting his creams on he told me Baby Daniel needed his cream on too. It was such a touching moment for Andrew and I to see all three boys showing their nurturing sensitive sides and also it was sad that this really is their life. Both Oscar and Harry have felt pain like no little child should feel. The worst thing for us as their parents is not being able to take that pain away for them.
I really do think we are over the worst for Harry and we are now waiting for more white days and less red. Oscar has also come such a long way in the last few months. I feel that he has a long way to go as the immune suppressants are masking what's really going on in his body and obviously we are still no further ahead with him sleeping but I think this week has been a turning point for both boys with Harry appearing more comfortable and getting on top of Oscar's infection. Fingers crossed for more of these weeks.