Haha gingergran and lisa you pair of loons! 
We've had a lovely day catching up with friends. Tomorrow I'm off to the hospice with the girls (dh's working). We are also going to check out the new sensory room in our local Sure Start Centre- they have a bubble tube and fibre optic lights which she'll love I'm sure.
This week we have had respite each morning between 8.30 and 9.30am so that Beatrice can stay at home whilst I take the girls to school. It has, of course, been very helpful. However... there does appear to be a small downside. Allowing more people into your home allows more people to have an opinion on how you do things, and I have felt a bit criticised and watched this week. It's nothing major, any NG tube feeders will know that before feeding milk or giving medicine you have to test an aspirate to confirm the location of the tube. Fine. With an NJ tube, you can't get an aspirate... all that comes back is the milk in the tube. (Well, this is the case with Beatrice.) But, the respite nurse obviously saw me giving medicine without testing for an aspirate (I used to do it every time, but never managed to get one) and 'reported' me to our CNN. Later in the day I got a call from the CNN asking why I wasn't doing it and told me the repite nurse would come out in the morning and remind me how to do it. 
I don't think I've felt that patronised in a long time!
Anyway, the nurse came out this morning and observed me testing for an aspirate and confirmed what I had been saying- you can't aspirate an NJ tube ("Oh, I didn't realise that.") So she reported back to CNN, who rang me this afternoon and told me I still must try and aspirate every time as that is what they recommend. Am I being stupid? I have to do a pointless exercise simply to tick a box saying I have carried out said useless task? THAT'S the worst part of having someone else in your house. Sigh.
It's the same as when the respite nurse had dressed Beatrice and had to document the bruises on Beatrice's body. The bruises that were caused in A&E by doctors attempting IV access. I fully support their Safeguarding process and completely understand why they have to document these things, but being at the receiving end of it makes me feel sad. I would lay my head on a railway track for Beatrice, I wouldn't harm a hair on her head. I can't bear to think there is a record somewhere of her having bruises on her little body. 
Anyway, onwards and upwards.
Oh, I went onto Contact A Family website and tried to find others with Beatrice's conditions. What a hoot! The most common of her conditions appears to be lissencephaly, but as such a broad umbrella term, the children with this condition can vary wildly. The other two conditions didn't fare very well either. I'd love to find some local support by meeting other parents with children with severe SN, but there doesn't appear to be anything nearby. Has anyone had experience of starting up their own group? (Because, obviously, I have nothing else to do with my days )