Wednesday, 6 August 2014

need a bigger boat

I'm really miserable about the amount of special kit we have to make room for. It's all useful stuff, but we need a bigger house to fit it all in. Or a wormhole or something:
  • Standing frame (to be strapped in to for an hour or so a day to give her good posture and hamstring stretch)
  • Specialist Davros seat with torso support (to do stuff like cooking or sitting at the dining table)
  • Small chair with torso support (to sit at the little table)
  • Peapod beanbag with torso support (to chill out in when watching TV)
  • Bugzi electric wheelchair
  • Manual buggy/wheelchair
  • Inflatable 'paddling pool' to go around the bed (so she doesn't fall out)
  • Electric hospital bed that goes up and down (to save our backs and take the other kit)
  • Sleep system, to go on the bed and provide support as she sleeps
  • Suction pump (in case she chokes on either food or her own secretions)
  • Kaye Walker walking frame (so she can walk)
  • Toilet frame
  • Electric bath seat (goes up and down and gives her seated support in the bath)
  • Bathroom step
  • General purpose step
  • Ramp out in to the conservatory
  • Three months supply of nappies (delivered quarterly)
  • A gross of Fortini Multifibre feeds, syringes and tubes (delivered monthly)
  • Spare mini button that needs to go everywhere with her in case her button comes out and she has to go to A&E
  • Carrot car seat (to use when she is going somewhere in a non-wheelchair-accessible vehicle)
All these things make our lives easier and we've got enough space, really. But today, there is school-holiday detrius covering the living room, glitter glue ground in to the rug, polystyrene eyeballs all over the room and chaos in the kitchen as B keeps the children occupied (very successfully) for an hour making pizza for lunch. And there is the old mattress on the lawn waiting to go to the tip; and all the old skanky bedding needing bundling up to dispose of ... and so on and so on.

I am really hoping that Make A Wish come through before the end of the school holidays and sort us out a break somewhere.

With babysitting.

1 comment:

  1. Whatever space you have, you'll fill, but there is a viable minimum - that is an awful lot of kit. At the least, I'm sure you could do with a bigger bathroom. And it's so necessary to get away from having everything in your face all the time, but I suppose that's hardly possible.