Supportive buggy/wheelchair

SLW
Online Community Member Posts: 2 Listener
Hi all. This is the first time I have visited this forum, so not entirely sure if this will work! I'm hoping to get some advice from other parents re a supportive buggy or wheelchair...
My son is almost 2 and half and has dystonic quadriplegic cerebral palsy, epilepsy and hearing loss. He can not sit, roll and isn't able to use his hands/arms. About a year ago I asked his physio if we could get supportive buggy for him as I was concerned that he is not sitting in a good position in his pram. I don't drive so he spends a lot of time in his buggy (usually an hour or so when we walk to hospital/therapy appointments). After months and months of me nagging, our local wheelchair service has finally given us a Snappi pushchair. At first I was relived to get something that is supporting his spine and pelvis but we seem to have a problem with it ...my son tends throw his arms out to the side (his physio calls it 'protraction'). His arms are almost always straight out in a starfish type position. The Snappi has no sides to it so my concern is that my son will hurt his hands/arms if they're always hanging out of the side. He has a very tight grip, so if he grabs something while we are walking along he could really hurt himself. I told the wheelchair service about this and asked if there was a way the buggy could be adapted. Their only suggestion was to strap his hands down. This seems like a ridiculous idea to me when we spend hours every day trying to encourage him to use his hands!
I think what he needs is a buggy or chair with some depth or sides so that his shoulders are kept forward. If he has something close to his shoulders it seems to keep his arms inwards but still allows him to move them around. A bit like a corner seat if anyone is familiar with those. I hope that makes sense!
So now I'm looking for an alternative buggy/chair that better suits his needs. I can't believe that my son is the only child with this issue and therefore think there must be something out there that is right for him. I don't want to compromise his back and pelvis support but I don't want him to hurt himself either. I'm fed up of having to 'make do' with equipment that isn't really right for him but it's all that's on offer. Once upon a time I used to dream of winning the lottery so we could have exotic holidays etc but now I just wish I could provide the things my son needs and deserves.
Sorry for the long rambling message. Grateful for any advice you can offer. Has anyone else had similar problems or knows of another type of buggy that might be suitable?
Many thanks x
My son is almost 2 and half and has dystonic quadriplegic cerebral palsy, epilepsy and hearing loss. He can not sit, roll and isn't able to use his hands/arms. About a year ago I asked his physio if we could get supportive buggy for him as I was concerned that he is not sitting in a good position in his pram. I don't drive so he spends a lot of time in his buggy (usually an hour or so when we walk to hospital/therapy appointments). After months and months of me nagging, our local wheelchair service has finally given us a Snappi pushchair. At first I was relived to get something that is supporting his spine and pelvis but we seem to have a problem with it ...my son tends throw his arms out to the side (his physio calls it 'protraction'). His arms are almost always straight out in a starfish type position. The Snappi has no sides to it so my concern is that my son will hurt his hands/arms if they're always hanging out of the side. He has a very tight grip, so if he grabs something while we are walking along he could really hurt himself. I told the wheelchair service about this and asked if there was a way the buggy could be adapted. Their only suggestion was to strap his hands down. This seems like a ridiculous idea to me when we spend hours every day trying to encourage him to use his hands!
I think what he needs is a buggy or chair with some depth or sides so that his shoulders are kept forward. If he has something close to his shoulders it seems to keep his arms inwards but still allows him to move them around. A bit like a corner seat if anyone is familiar with those. I hope that makes sense!
So now I'm looking for an alternative buggy/chair that better suits his needs. I can't believe that my son is the only child with this issue and therefore think there must be something out there that is right for him. I don't want to compromise his back and pelvis support but I don't want him to hurt himself either. I'm fed up of having to 'make do' with equipment that isn't really right for him but it's all that's on offer. Once upon a time I used to dream of winning the lottery so we could have exotic holidays etc but now I just wish I could provide the things my son needs and deserves.
Sorry for the long rambling message. Grateful for any advice you can offer. Has anyone else had similar problems or knows of another type of buggy that might be suitable?
Many thanks x
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