Tuesday, 3 February 2009

Not a good day.........

Well I guess that's what happens when you cant wait for an appt - the geneticist replied today and it wasn't good news. The CGH Array didn't find anything - no diagnosis for Ryan.
Some people might think that its good that they didn't find anything but no.....................

To say we're gutted is an understatement - me more so than Craig as he isn't as desperate as me to find a diagnosis. I knew it would hit me hard but never expected it to be this bad. I feel sick, lost, just empty inside really.

I was really hoping with all my energy that they'd find something - this is the 'last chance' test for us. Genetics have nowhere else to turn, no other tests they can try, no other syndromes they're 'convinced' he has. Maybe this is why I feel so empty, maybe I feel like we've come to the end of something - I don't know what though. I can't believe he's very nearly 6 and we're no closer to an answer - have we really put him through all those blood tests, skin biopsies, muscle biopsies, x-rays, scans, MRI's, those really not nice tests involving tiny amounts of electricity passed through his tissue - has it all been for nothing?? Have we really subjected him to it all just to be told 'sorry still haven't got a clue'??!!

I wish with all my being that this could've been different................

Julie x

1 comment:

  1. Hi Julie - just found your blog today - I know exactly what you mean - Sam is now 12 and genetics still don't know what diagnosis he has - it's very hard just waiting. Caroline