Jonah's special health visitor has had an email today from the genetic counsellor! It has only taken about 3 weeks for her to get back to our special health visitor. They are doing the SLC9A6 test (angelman-like syndrome) but it isn't yet in place in Cardiff and they can't tell us how long it will take! They are not willing to do the test for Mowat Wilson Syndrome until the results are back from the SLC9A6 test. They first mentioned doing the Mowat test back in January 08 and we are left waiting still on this!
I have really just had enough of the waiting around and having to abide by the genetics agenda! They have no understanding of the situation they have put us in, all the waiting and building up of hopes that the next test could be the answer to Jonah's many problems!
I feel a change of geneticist and a strong letter and phonecall to the big boss in the genetics department is in the pipeline!
We want to try for another child but how can we when we have these last 2 remaining tests hanging over us! And being dragged out longer than necessary!
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