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sorry you are feeling fed up with it all, we're 3 and a half year in and have recently been told that we are still right at the beginning of even finding out which group of genes is the most likely cause for concern let alone testing them (even though we have had endless tests already) it does you good though to let it out as it is very frustrating to think you've got something on the horizon, to then be told its going to take longer.

In respect of the bed restraints, ask for a link for images or something so you've got an idea of what you're looking at. I know our friend's little boy has a special bed which has a mattress that has parts to it to support him better/keep him in certain position rather than anything securing/restraining him, maybe this is a possibility. Its a really important factor for them to have good positioning in bed. My little boy needs lots of repositioning which is one of the things we have to do at night to reduce the impact it has on his posture. He has however got used to sleeping on his tummy/side now as we have done theraputic positioning/sleep support since he was tiny.

Hope its not too bad what they suggest anyway. Big hugs x

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Hi I know where you are coming from with regards to waiting for test results.
My daughter Sophie, Simon (Sophie's dad) and myself all had bloods taken back in May 2009 for genetic testing. We only got the results back in March this year 2011 as they were new bandning tests and took 18 months. Results can back as a possible negetive for whatever they were looking for so Simon and myself have had to have more bloods taken so they can now do more tests. (no time frame given for this lot so no doubt another long wait)

As for the bed restraints, Sophie has a sleeping system which is basically a sheet and L shaped plastic supports that have velcro type stuff on them. They are then covered with a special mattress to comfort her followed by a bamboo sheet that regulates her temperature. It holds her in a straight position during the night, or thats the idea only Sophie worked out she can still get out of it so it needs reviewing again.

It sounds terrible when I was first told she would need this but once I saw it wasnt so bad. Not sure if this is going to be the same sort of thing or not, but help to give more help and advice about it if its the same hun.

Sara and Sophie xxxxxx
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thank you all for your replies, feeling much better today.Took alfie hospital yesterday and he has ligament damage in his ankle and foot which is going take a few weeks to heal. i'am, sure you all know how it is, it's such a rollercoaster ride. Alfie is only 3 and i know some of you have gone through years of waiting and i know we probably have many more to come. i should know better we waited nearly 12 months for the results of his brain MRI. think it was so frustrating coz of the way the letter they sent us was worded also we'd love another baby but coz chance iv'e passed it on we'll just have to wait and i aint getting any younger!! but hey hoe we'll get there. x x
were all angels in waiting!!

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