Hi Gingegirl - I don't think there is any right or wrong way, but in my limited experience it?s worth keeping in touch with the Paeds/Geneticists, we phone every couple of weeks. We're not rude or abrupt or anything. We just phone and say 'any news, any results, it is worth coming in to see you blah blah?' Both our development paed and geneticist have remarked that we are very 'proactive' we think that?s code for 'pain in the ass' but it seems to work. Another m'ner sent us a really good diagram of the tests for Angelman Syndrome, which really helped us when the Geneticist was explaining which tests DS had had as he called them by different names. The Unique charity are worth getting in touch with if you haven't already - they have really good, easy to understand guides to the various tests, they may have one for the testing involved in Williams. I haven't come across anyone else on MN with a DC with Williams, you could maybe start a thread asking.
Hi Glimmer - (I think I'm back!) 
its brilliant news that your DD isn't showing many of the symptoms, never forget that the Drs don't know everything, esp regarding these rare conditions. Many years ago parents with children with Downs would've been told, 'Oh they'll never do this that and the other' but many go on to lead full and independent lives. I know exactly how you are feeling regarding a dx - until a few weeks ago we were full expecting an Angelman dx and preparing ourselves for the fact that DS would be non verbal but now with no dx we feel that everything is still possible. I think if they do find out the cause of the delay with this new research project I'll just view it as that ? an explanation for the GDD. I think this is all just part of the process of coming to terms with things ? you will get past this stage!
As for other people - I'm also at that tricky stage. People are beginning to notice - I get that oh what age is he and I say 27 months and I can see them thinking bloody hell he's behind I started with he's 27 months but he's got developmental delay now I just don't bother - the most important people know. I'm struggling with questions from children though - in the last week, two children about 4/5 have said 'whats wrong with him?' any advice from anyone on how to deal with this would be gratefully appreciated. I was going to say oh he?s just special but was worried at that age I?d get oh am I not special back.
Hi Bigcar ? did you get the funding for the school place? Sorry, if you?ve already posted I must have missed it. The Microarray is being done as part of this research project so we?ll not get any results for a year but we are investigating having it done privately in the meantime as our trust area don?t do it. So hopefully we?ll be able to have that done in the next couple of months.
Shaz298 ? do you know the name of the research project Luuk is going to be involved in?
Right, I?ve gone on long enough. Hope everyone else is well x