When you have a child with a physical disability, you collect a lot of different funny looking equipment. Most of it costs over $1000 - sometimes up to $5000 for a 'simple' piece of equipment that could be put together very cheaply. Lucky for us most of the stuff we have is on loan from places such as St Giles or the Community Equipment Scheme where we pay a yearly fee to hire it.
As Noah has no control at all over any part of his body it is very hard to find good equipment that is really supportive. For kids sitting in wheelchairs all the time a big problem is their bone density - their bones are very brittle and can break easily and their hips can also become dislocated very easily because of the way that they hold their bodies and also the way that they are positioned all the time. To help with bone density and hips it is good for kids like Noah to go in a standing frame. This allows them to do some weight bearing. When Noah was little he had a cute little standing frame with its own tray. It looked great, but didn't work very well as Noah couldn't hold his head up for very long and got very tired in it. This is his physio and his old carer that we used to have that we LOVED. She left when she finished uni and started teaching at a special school.
Since then we have tried to find a standing frame that will suit him better. We have tried supine standers (ones that lay back and tip forward rather than the other way around) but none of them has supported him very much and have left lots of pressure marks in different spots. His physio (still the same one!) kept hassling the Equipment and Technology Library for one that would suit and this is what they came up with - especially for Noah. It looks like a torture device, but is actually just a table that they have padded up and it looks like it may actually work okay. It was actually probably very cheap to make and suits Noah better than one that costs a couple of thousand dollars.
Now we have to find space for it at school. I think school has a fit every time they see us coming in with another piece of equipment for Noah to use, as there is not a lot of space to store everything. Kobe came along to his first physio appointment yesterday. Harri is so used to therapist and Drs appointments etc and now it is Kobe's turn. He was very well behaved and I'm sure in 12 months or so he will be running around St Giles having just as much fun as Harri.
You're right that is a scary piece of equipment. It looks like the electic chair or something.
ReplyDeleteNicki
Kobe looks very content sitting there! Does Noah like his chair? looks like it's comfortable and supportive for him!
ReplyDeleteMaybe you should go into business (in your spare time, lol) and make some equipment... sounds expensive, great that you can hire it though!!!
Noah looks great in his new stander, so glad you found something that works. Have the tried the SuperStand with him. That is what Junior has and is the only one supportive enough for him.
ReplyDeleteVery good if it works, looks kinda weird and scary though. Hope I didn't have any equipment like that when I went to stgiles, or I'd have never wanted to go.
ReplyDeleteIt's funny how the simple things seem to work the best, rather than costing thousands of dollars. That last photo is great, esp as Kobe looks like he is looking right a the camera.
ReplyDeleteIt looks like something they would put Hannibal Lector in!!! Hasn't he grown up. He was A beautiful baby and now he's a beautiful boy Love Mum xxx
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