4th August
So more time has whizzed by and I have still some catching up to do. The latest on the hospice is that the manager phoned us up and said in the nicest possible way that it is for respite or nothing. Which is a bit ironic as we didn't really want to go there in the first place but we were referred in the hope that we could get some counselling and support through them. We did feel when we went for a visit that Rosa isn't actually ill and it wasn't really the right facility for us at this time but we had hoped that it might provide us with an opportunity to talk things through with someone experienced and also to meet some other parents who know about the boat we are in. We both felt a bit flat after their phone call as we wondered quite why we had put ourselves through the whole emotional experience at this point if we didn't need to and it wasn't going to lead anywhere. Their perspective is that they cannot provide day facilities as they are tightly constrained on numbers and if there are day people there it might compromise the facilities for proper respite people, all fair enough but I did say on the phone to them right from the start it was mainly counselling support we were looking for, I said it also on the forms they sent us and yet nobody realised they were not the service we were looking for until after we had spent the day there, but anyway, when and if the day comes we will know all about the place and will feel familiar with it. I know the service they provide is wonderful but we are not there yet and I feel slightly misdirected by Drs and Portage, I guess it all comes back to the lack of counsellors in North Devon, if there was someone else they could have directed us to I'm sure they would have....ho hum, water under the bridge already.

Going back a week or so, we were back at Bristol for the MRI on Thursday. As I think I said, overall it was a much more positive experience than the first time but still, really don't want to be doing it at all. Putting the baby under general anaesthetic is horrible and I don't ever want to get used to it, although your rational side frantically rationalises the instinctive animal side is pretty strong and loud. Specially as just before we leave her with the professionals after she has gone under they ask or tell you to kiss her goodnight, that just makes me feel like they think she might die. Maybe they know it is a possibility or maybe they just think it's a nice thing to say, it doesn't make it easier though. All I wanted to do was scoop her up and run out of the hospital and away but the rational side prevents it, she did come round again so it was OK but we really don't want to do it any more than is absolutely necessary. Obviously the health care professionals idea of absolutely necessary is going to be a bit different than ours, they have boxes to tick but it's not hard to make things take longer with the NHS we just have to not be able to make a couple of appointments and that is another 6 months just like that.

I've eaten my ice cream and I'm tired now, Rosa continues to be a teethy creature after dark but still mostly happy sweet pea in day light hours consequently, feeling a bit sleep deprived but loving this blissful cuddly happy girl we see for most of the day. I'm going to try and make a piano playing video, it is her favourite thing at the moment and she giggles and wriggles with happiness and excitement, a real joy to behold. We love her so much and do feel lucky despite it all. Xxx

Sunday August the 2^nd

Another pretty good day for us all again. It is really good to have Hatfield coming up (soon!) gives us some real purpose and motivation to get lots of things done and weirdly not just work things.

Being busy seems to create more busy-ness. We know this but it often feels like we have been very busy going round in little paper chase and phone call circles which is vital but by bedtime it is hard to feel you have actually achieved very much. Rosa seems to be changing her nap pattern at the moment, I'm not sure if it has to do with persistent teething but think it is probably about time she changed from two ever decreasing naps to one bigger better one. She just hasn't quite worked out where in the day it should be so it feels a bit muddled, she needs to stay awake really till after lunch I think but she hasn't quite got the stamina to make it there yet, the last few days she has ended up lunching at about 3.30, I'm sure she'll figure it out soon, we hope! One big nap does mean that G and I can get lots done again though which is great, the last couple of weeks I'd been wondering if I would ever have more than half an hour in the day to get anything done.

Going back once more to the preceding week which is fast receding from my memory! We survived the hospital visit. Rosa coped amazingly with the fact that she wasn't allowed to eat from 7am until after she had come round from the anaesthetic, which ended up being about 3 I think, as usual she took it all in her stride, she did nuzzle me for boob for the first time in ages just before we went in to the anaesthetists ward, it was very cute and quite surprising. I don't think I have written actually, Rosa gave up boob over a month ago! All that fuss I made about not wanting to be an extreme feeder and she gave it up on her own terms without any fuss really, in the space of about 6 weeks after her birthday she went from still having boob with every meal to having none at all. It felt exactly right and just how it should be, gradually with each feed, I didn't offer it to her and she didn't ask. Breakfast was the trickiest for Rosa to give up, and bedtime was hardest for me, probably because it was the last one to go and such a lovely cuddly special time together. A good end to the era though. Going back to the hospital she was extremely upset when she came round, which apparently is normal. She soon rallied though and consumed everything we had brought with us for her to eat and drink! That was brilliant as they don't want you to leave until they have seen the patient eat and drink and by the time they came to check she had already monstered her way through a huge pot of food and also her entire jelly drink. Hooray for Rosa, brave little girl. We were all exhausted when we got home but had the neurologists appointment on Friday so needed to find a bit more oomph for that. Big sleeps all round and she was back on top form the next morning. Time for me to call it a day now, nearly caught up! xx