I am learning so many new things about CHARGE syndrome! I joined a group on the Internet with other parents who have children with CHARGE syndrome! It has been a true blessing. It's like going to Kindergarten all over again...I have found my group of friends that I belong with and have the same interests (our sweet, little CHARGErs). I can only get so many answers from doctors, but these parents have been living with these children 24/7 and have the honest answers. For instance, I found out the other day that CHARGE syndrome heightens your sense of touch, which is understandable due to their lack of other senses (vision, hearing, and smell). It is difficult for them to touch a new surface such as grass or going from carpet to wood flooring. I had never even thought of this nor did doctors even mention this to us.
These parents know exactly what I am experiencing on a daily basis. They are so open and willing to support you in anyway! It is exactly what I needed to add this journey. All of children have their own stories and a wide-range of daily struggles, but they are all so amazing!