Friday 1st May
So the day of the neurolgists appointment has finally arrived but its not until 2.20 so we are all being very busy and trying not to think about it. We are planning on going off somewhere lovely in the van tonight, more or less straight from the hospital so are getting ourselves ready for that instead of pacing.
Rosa is asleep and so I thought I would just quickly write about some of the good things that have happened this week to try and slightly make up for Tuesday's very ranty post!
Rosa's chuckling capabilities are definately coming on, we have had some lovely happy sessions recently, I even managed to make a very wobbly video which we will post when G has worked out how to turn it round. Nursery was good as usual this week although I think that Rosa's nap patterns are changing at the moment and she has been REALLY tired at both sessions. Sally the physio was hoping to fit her for the standing frame they have there but she wasn't up for it so we'll try next week. She has been doing some really good 'looking' and tracking of objects which is lovely to see, she had a great time yesterday under the UV light in the sensory room watching different illuminated objects as they were moved around, even had a little chuckle about it! Also still very keen on singing and being read to, in fact when she does have one of her meltdowns which still happens a bit more than we'd like I have found I can read her through it, quite long stories are the best, it doesn't seem to be about the pictures either, I can remember I used a very similar tactic with Louby not so many years ago..... I think it must be my monotonous voice! We are currently working our way through Little Grey Rabbit stories and I'm loving it!
We had our second music therapy session on Wednesday. G was in two minds about whether to come or not as he found it a bit difficult to keep a straight face last week and had re-christened it 'swing yer pants jingly jangly therapy'. He decided to give it another go and we were all really glad he did, last week we were all a bit bemused, we didn't really know what to expect and I think Simon was quite tentative as he didn't know Rosa at all and hadn't had any info on her either. But this week was a totally different experience, Rosa got into it straight away and got more enthusiastic as the session progressed, clanging her chimes deliberately and enthusiastically and turning to Gareth and me very pleased with herself. It was absolutely lovely and we can't wait to see how she responds as time goes on (it is a ten week course).
Anyway, she's awake and I'd better go and tend to her, we are not looking forward to this afternoon but actually she can't really give us any bad news as we've already had the worst. Hopefully she'll be really nice and positive and open to ideas. In Dr.Arend's defence I think I should say that it may slightly be a cultural difference, he is South African and although the language is the same the communication is different....We'll see.
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