Wednesday, 8 January 2014

things i would like to know

I was going to do a light-hearted post about 'things I would like to know'. But actually, it turns out that the main thing I'd like to know is why this is all so bloody hard.

We went to Bristol today to see the Respiratory Consultant, who has booked another sleep study and wants them moved biannually rather than annually.  He did a lot of explaining about night-time respiratory support - it is possible she will need it, if not now, in the future. This included a deeply upsetting conversation about how it's cruel to put children with a short predicted lifespan through the trauma of a tracheal breathing tube - six months in hospital - if they are not going to survive that long. This is not currently on the table for Nenna, they would be looking at CPAP or similar.  

We then got home to find two emails from the SENCO faffing about taking her swimming and riding. It seems like such a small thing to ask them to sort out in the scheme of the things we are having to deal with; and they are now in the fourth month of not doing it. 

So that's that, pretty much.

In other news, Leo has taken to praying in the bath. I have no idea where this has come from. My requests for divine intervention tend to be of the 'pray when my arse is on fire and try to remember to say thanks when fire is extinguished' type. He was in the middle of a long, involved monologue last night that I thought was directed at me and when I asked him to repeat himself he yelled 'I AM TALKING TO GOD, NOT TO YOU, MUMMY'. Which would have been fine, only his entire conversation with the Almighty was also conducted fortissimo. 

Tomorrow, I am going to put thirty duck eggs in the incubator and mate two rabbits. I may write about that. I may not. Last time I tried it, I ended up with rabbit spaff all over my jumper and it was all very unromantic.

Some of this I have cut-and-pasted from a facebook status update. I'm out of the habit of blogging and it all feels very clunky and not-quite-flowing. 

For today, that is all.







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