Wednesday 15th April

Hmm; I'm not entirely convinced about this blog malarky I'm hoping that everyone will find us eventually.
Another short post just to let you know that we were offered an appointment with the neurologist in Bristol on April 27th but as this was only four days sooner than our existing appointment in Barnstaple it doesn't seem worth the trek. Having waited nearly 6 weeks four days more is neither here nor there, so the appointment stands for May 1st.
Gareth phoned the orthoptic (eye) consultant again today as he had read that lots of Canavans kids are long sighted and glasses can help from a young age. We don't know if she has already been tested for that. The consultant (Caspar Gibbon - what a name!) is another lovely chap but he didn't have Rosa's notes in front of him so he wasn't sure either. He is going to find out and if not get us in to test her; she would be everso cute in glasses!
We also dropped off some housing/council tax benefit forms today. On the one hand should hopefully really help us through this period but on the other hand it is pretty gutting, neither of us wanted to go down that route we had hoped we'd never need to again but of course we didn't plan on this scenario.
On a brighter note, Rosa had a great day today, last couple of days actually; happy Rosa back again, its so nice to see her and it makes it sooooo much easier to cope with everything else. It means that we are not constantly doing damage control to prevent shouting but actually having some fun. We went to visit cousins on G's side in Totnes on Sunday, they've never met Rosa before and it was lovely but for whatever reason Rosa wasn't very happy and it always seems such a shame when people miss out on meeting the real Rosa and meet a grumpy tummy achy one instead, I suppose that's probably just babies really. I think we are both aware that we need to be really careful about putting everything down to the 'disease' we are getting an inkling that there is also a rather naughty little girl in there who is clever enough to take advantage should we let her! Although what is going on for her does affect her entirely and has been a part of her since before she was born there is also a proper personality developing all be it in a different way from 'normal' babies. We can see that things are beginning to delight or frustrate her in more visible ways, we also think she has a bit of a temper on her...not sure where that came from? We really want to bring her up in the same way as we had planned to but it is a bit of a catch 22, she isn't a 'typical' baby so usual baby advice doesn't necessarily apply, we are all somewhat in uncharted territory and the future is still so unknown.....how do you wean when she won't/can't drink from anything other than me? Could be normal baby stuff, could be canavans and each day is full of these kind of tricky judgements. I know we'll muddle through and stuff like that is the same for everyone, its just that mostly everyone else knows that whatever is going on won't last for ever, baby will grow out of it and we just don't have that knowledge.
We're looking forward to catching up with dear lovelies at the weekend. The garden is beautiful at the moment and we ate our first asparagus that we'd grown yesterday (one spear each!) We are making the most of as many moments of spring sunshine as we can. It is a lovely time of year, I keep thinking of the rest of Spring and Summer stretching ahead and life doesn't feel so bad.
This turned out to be a much longer than I meant but babble is good........more as it happens.
A xxx