Hun, I am so glad that at least you finally have the answers. There must be some comfort in finally knowing

I am sorry that it is such a rare condition that it will be hard to get good information about it. I can see that in some ways that might be a good thing - you can discover all the wonderful little unique traits for yourself - but in others it will be tough. I hope that you are able to find the support that you need. I know that Immy already has from you