It is a bit too late to start a post really as usual but keep meaning to and not...Also lots more water under the bridge since my last rather ranty post!
The most important thing was that Rosa seemed to turn some kind of corner and peachy happy Rosa has been with us a lot in the last 10 days, well nearly 2 weeks now which as I have no doubt said before makes the whole thing so much easier to cope with. Despite the biggest tooth so far finally breaking through and there being a fair bit of usual Rosa problems (teeth hence saliva hence tummy etc.) she seems to have shaken it all off and squeezed her farts out with delight rather than pain lately, good stuff, and proving once again she is her Daddies girl!
It was a relief to us that she has been better not least because the week just gone we have been building up to for quite a while, it being full of biggies.
We had a lovely social party weekend in Cornwall with precious friends and family. It did have some difficult moments as I think there always will be for us when there are other smalls around, it's not like that stuff particularly gets easier it just sometimes really hurts and other times doesn't so much. I don't want to miss my loved ones babies growing up because I'm in a different place, that doesn't make sense either. It is very touching how the other kids are with Rosa too, for the most part there seems to be a gentleness and interest that differs from their interaction with each other. I expect they probably pick up a fair bit from what the grown ups are feeling but its really nice to see. Of course Rosa loves a party too and had a great time wriggling around in the middle of the floor listening to it all go on around her.
So we were in quite a good place to cope with the triple whammy this week had in store for us, firstly we went to look at the children's hospice for the first time on Tuesday, Thursday was Rosa's second MRI (MRS to be specific) scan at Bristol and Friday was our second appointment with Dr. Sharples the neurologist. Going to Little Bridge House, the hospice was such a mixture, I think for the first hour we were there we were both ready to run for the door at the earliest opportunity but managed to resist. We were shown around by a lovely girl called Emily who will be one of the three people who will work with Rosa should we decide to use their facilities. The main reason we had decided to get referred there was that it seemed to be pretty much our only option for getting some specialist counselling which I do still really think could help us work our way through this future we find ourselves looking at. Having been and spent some time there which was overall a very positive experience I can see how it could help us all in other ways but of course, as usual, I don't want to look too far ahead. Their slogan (making the most of short and precious lives) makes me cry and as so much seems to, the whole experience welled up a whole muddle of emotions that I never seem to quite manage to untangle. Weirdly one of the most positive things for both of us was having lunch there, there was a big dining table or smaller tables in alcoves or in the conservatory, or sofas to sit on and lots of people were around sitting in chatty groups. The food was really lovely, this was a huge surprise, I think I had expected hospital style food and it wasn't at all. I don't know why but we both found this incredibly reassuring and I think we definitely relaxed a bit through lunch. I also had a chance to chat to another father who was there with his poorly daughter, her sister (they have great facilities for siblings too) and his wife. It was really nice to talk to him as he was also quite new to the place and couldn't speak highly enough of it. They had spent a lot of time in Derriford which sounded like hell and the love and care they had all received at Little Bridge House had obviously made such a difference to them all. The general atmosphere was calm, warm and welcoming but I think a big part of us still screams no! I'm not expecting that to go in a hurry. I felt very positive when we left but cried a lot later. We are going back on August the 4th to meet the chaplain who may be able to be a sort of counsellor for us....not sure, they all still seem to look a bit blank when we say we want counselling. Actually we told lovely Helen our portage worker that we hadn't got anywhere with this and she did leave a message on our machine on Friday to say that she might have found someone who could help, we wait to hear from them. Anyway we are also down for trying out their sensory room and jacuzzi on the 4th.....I'm sure Rosa'll be a fan! So that was Tuesday, glad we'd done it and very glad and very sad after it was over. I have just realised it is midnight and I've barely started to catch up but sleep is important too at the moment. More sooner, I promise!