New message from Sam’s dad

Posted by stuff4sam on January 26, 2007

Life here is as hectic and busy as ever. We don’t seem to stop in between hospital visits, getting Sam up and about and getting the care organised. Despite a few colds, which knock him sideways and are always a worry, he’s very happy and as active as ever. It takes a lot out of us keeping going like this and there is nothing ‘normal’ about any day, but seeing him happy or seeing him move his arms fills us with energy and keeps us going for the next day.

The arm supports you bought are just amazing and have defintely improved his range of movement. He now moves just a few cm’s rather than mm’s but enough to knock blocks off a stool and make a loud bang and maybe one day to operate a switch – which is our aim.

Sam gets such joy seeing his arm move. I wish you could see the look of wonder he has. We alternate using the arm supports and the FES bike. Standing with his arm supports makes him look like the robotic gun fighters from Matrix 3! He looks so pleased with himself!

We have just got an electric powered chair on loan which Sam operates with his chin/lip control. This is the next life changing thing for Sam. He hasn’t quite got it yet but it’s a cute little buggy type thing and he actually makes himself move. It’s just fantastic seeing his face and I’m sure he won’t take long to realise the control he can have. For him to move where he wants, or face where he wants will change his life. I can’t wait until he’s zooming off! So I’ve been bashing things down to make space for him to move. It’s like having a quad bike in the house!

With your help, the next thing that would make a difference to Sam is an outdoor 4×4 pushchair/buggy/electric chair that we could take off-road, on beaches etc. We would like an electric chair for Sam but there could be issues with chin control/bumpy ground and broken teeth! We’re just looking at what’s available, but would love to get Sam off road again. We’ll do more research and let you know what is next on our wish list, made possible by the constant kindness of you all.

Best wishes,

Neil, Kazumi and Sam.


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