I'd never have thought sitting down could be such a problem. But it is. Our son has a number of chairs - a wheelchair for sitting in and moving around in, a postural seat that doubles as a 'comfy' chair and a 'standing frame' for chest drainage and a toilet seat - you can work that one out yourself. And all three are either problematic or broken at the moment.
His wheelchair footrest (non standard chair) has obviously been driven into something hard and got badly twisted. We've had maintenance out twice, who hit it with various sizes of hammer but it's still too bent to support his feet properly. So we now have to get the manufacturers out to 'assess it' - but not until after the next wheelchair clinic (not sure when that is yet), after which there will be a delay while someone finds a budget to get it mended out of, and eventually it will get fixed. It's been damaged for about a month so far and looks like another month or two before it gets mended. This is normal.
His postural chair has never been quite right as it's too tall for his chest drainage position. It's taken about a year and various 'bodges' and 'adjustments but the manufacturer has just agreed it can be altered without invalidating it's 'integrity'. The engineer has therefore cut 4 inches off the frame and it now works. I wanted to do exactly this myself, at no cost to anyone a year ago, but that isn't allowed. This also is normal.
His toilet chair was a more entertaining problem. The bracket holding the 'pot' had broken. It still worked if you put the pot on the floor, carefully positioned for a 'long drop'. The menders turned up last week and fitted a velcro strap to footrest - no idea why, bracket is still broken. Bemused and cross phone call later and they should be coming back to do the right mend some time soon - we hope. Normal service has been resumed.
All I want is for my son to be able to sit down normally in something that isn't broken.
One day I'll tell you the saga of the gastrostomy feed system.
Friday, April 15, 2011
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