The JSF&RCD Conference is finally happening!!! We arrived yesterday afternoon and it has been non-stop ever since. We are learning so much and meeting such wonderful people. It is so comforting to finally be surrounded by people who truly understand what you are experiencing and feeling. Not that the support we receive at home isn't much needed and appreciated, but this is a whole new experience.
There have been several workshops and meetings so far. Last night presenters talked about new breakthrough research in JS. Today we heard from genetic counselors about testing and prenatal diagnosis, and also from a geneticist involved in research with the kidney/liver complications that can occur. A financial advisor also spoke (I made Will listen to that one, I can keep up with the medical jargon but money talk confuses me hehe!) We have so much in that area to learn and consider also! Having a special needs child complicates much more than medical care, your financial world is also turned upside down!
We are scheduled for several individual and private consultations with different specialists. So far we have met with the researchers from the University of Washington, Drs Glass and Doherty. They are so wonderful and knowledgeable. It is so nice to talk with medical professionals that have a true understanding of what is going on with our child. Tomorrow we talk with some neurologists from Switzerland and a behavioral specialist, then Saturday the kidney/liver specialist.
There are so many wonderful families here. It is hard to describe what it feels like to look around and see the other children affected by JS and how they are affected. There are families here from all over the world, Mumbai, the Netherlands, Australia.....and we thought we traveled a long way! LOL! I'm sure we are in the midst of making some lifelong friends and will have invaluable contacts from now on.
I can't thank the people who helped make this trip possible enough. This is the most wonderful gift Will and I have ever given ourselves and Haley. I just want to say thank you again!!!
I hope to get some pictures tonight and tomorrow. I have been so overwhelmed by just being here, I haven't even gotten the camera out yet.