Rainbows Christmas Party

Laura had a lovely time enjoying the music and disco lights at the Rainbows Christmas party! She especially liked a balloon flower that Mark made for her. It was nice catching up with staff and other families!

Christmas production

Just been to see Laura's Christmas production. It was lovely!! It was a medley of music and movement with a short nativity at the end. Laura actually had a couple of little solos as she couldn't do what the others in her group were doing and so went on first and then they did their bit around her. It was sad in a way that she wasn't able to join in with simple things like processing in a circle holding hands but that's Laura!

She was very good, on task for most of it, as were all the kids. Mick came along to watch too which was good and then we went back to the class for a cuppa and a mince pie. Laura wanted to play out but the playground was being used as a car park so she was very unhappy.

A new play area

There's a new indoor play centre opened in Loughborough and the Homecare carers took Laura there today - she had a GREAT time!! It's for 0-8 year olds but Laura can get away with being under 9 for some time yet I think! It's all soft play, ball pits etc and there's a cafe area for grown ups, so it's ideal at this time of year when it's cold and mostly wet outside. I may venture there myself in the Christmas holidays although will try and persuade someone else to come along too as not sure I am up to managing Laura out and about by myself yet.

Balloons and balls

Laura still loves playing with balloons and balls. She has mastered carrying four balloons at a time although it takes her a fair bit of trial and error to achieve it and is quite comical to watch! She has also adapted this to carry three and simultaneously kick the fourth!! Quite skillful really and I guess this sums Laura up, if she wants to do something then she can find a way but if she is not interested she won't bother. So sometimes we think she isn't capable of the most basic tasks/toys when she probably just doesn't see the point in trying.

Another big hit this birthday are some cute colour-changing bath ducks. They change colour whilst floating around in the bath. Lovely and very calming especially if used in the dark. A friend of mine at work bought them for Laura along with a light that can be attached to the side of the bath. This can be set to one colour or put on random colour change. All the carers who come to bath Laura love these so I must ask her where she got them from.

Seizure alarms

I got a package this morning from the Muir Maxwell Trust (MMT). MMT fundraise to provide free epilepsy alarms to kids under 18.

I'd heard about the alarms some time ago but had heard that they don't always pick up seizures with subtle movements, so I hadn't bothered to apply. Instead I've been trialling a Finnish alarm but that is proving troublesome as the Parent Receiver Unit really is inadequate. The firm keep trying to improve on it but that is proving expensive and time consuming sending the units back and forth in the post.

Meanwhile I heard last week that MMT had a new alarm, so I emailed with them and it turns out they have two different alarms: a seizure alarm which works on movement and an apnoea alarm which works on lack of movement/breathing. They recommend a combination of both for us, so I decided to apply. Being as they are free I figured I might as well try them before shelling out the £600 for the EMFIT alarm which is not quite there yet.

Anyway back to my package... it wasn't the alarm as I have to get a form signed first to apply for that but it was a MMT teddy called Max. They had sent it because Laura is the 1,000th child to receive one of their alarms! They asked if we'd do some publicity for this and I don't see why not, they're a very worthwhile cause and actually Muir Maxwell has Dravet syndrome like Laura so all the more reason to support their charity.

Hopefully the monitors will work for us. Watch this space!!