People's comments sometimes hit home

I went to buy Laura some new clothes today as she has grown a lot in the past year and I know a lot of her spring and summer clothes won't fit her this year.

I'd really enjoyed choosing her lots of trendy outfits, always having to be careful to choose trousers without low waists as she is still wearing nappies. I really like her to wear lovely age-typical clothes as she is 10 now and the current fashions of leggings and ra ra skirts with trendy tops are good to disguise that she is wearing a nappy.

But my enjoyment was dashed by the comments of the checkout lady. It wasn't intentional but it was pretty ignorant and made me feel a little sad. She started off by commenting on how lucky my daughter was getting so many lovely clothes but then remarked that I was very daring choosing so many clothes without her being there as 10 year olds like to choose their own clothes. I said that she was happy in whatever I chose. Then she advised me to enjoy it whilst it lasted as she'd soon want to buy her own clothes and wouldn't be seen wearing anything her mum chose. I smiled and let it go, as sadly this won't be the case

I think one comment would have been OK but she did go on and on and I wondered if I should say something but decided not to bother. Now I wish I had done as she shouldn't be making these assumptions and generalisations.

Long time no blog

Laura's favourite things...

Apologies for being away for so long! I finally signed up for Facebook and that seems to replace the blog in some respects, although I will try and update regularly here too.

The Dravet conference in Verona went really well, my presentations were very well received, learned a lot from the world Dravet experts and made lots of good contacts.

Laura is doing relatively well at the moment. She had a bad sz at school on the last day of term and we ended up in hospital for the night but has been ok since.

CAMHS (psychiatrists) are doing an assessment for her behaviour and communication, and that is proving worthwhile but long-winded. Some of her screaming was definitely linked to constipation which with movicol, lactulose and coming off Topamax, has reduced a lot.

Since I last blogged, Laura has become obsessed with being outside in the back garden, playing with water. This has been great for her and for us, as before that she spent most of the time watching DVDs. Even through the winter, clad in her snowsuit, hat and wellies, she has spent long periods slopping with water and soapsuds.