It was wonderful to spend time with our online friends and CHARGE family. You just cannot put into words the feeling of everyone "getting it" with no explanation. Truly, truly awesome. I feel overwhelmingly blessed to have this family of support on this journey.
There are a few medical professionals who have really fallen in love with the CHARGE family and provided very informative, compassionate presentations. We are also blessed to have their expertise and research. As a fun souvenir (ha ha), I bought the American Journal of Medical Genetics. The entire volume is focused on CHARGE Syndrome. With this fun-filled book, will I be the life of a party or what? :)
To continue expanding the support and research projects, The CHARGE Foundation has put a lot of focus into increasing membership and fundraising. There is so much work to be done. Beyond the extreme need for further research and support, there is also such a need for individual support for the families. Nearly everyone is experiencing quite a financial hardship due to out of pocket expenses...therapies, travel, time away from work, equipment, behavioral programs, etc. It is so frustrating that families have this intense stress in addition to the lifetime stress of raising a child with such complex medical, developmental and behavior needs.
Speaking of "needs," here are a few new concerns brought to me during the conference:
- high risk of scoliosis and other bone irregularities due to low muscle tone
- need for orthotics
- VERY irregular executive function leading to extreme behavior issues, including OCD, repetitive behaviors, lack of control, lack of ability to regulate and so on and so on
- progressive hearing loss
- various alternative therapies and approaches to education
Ok, just thinking about all this wears me out a bit. It's so much easier posting cute photos of Mr. Max and his friends! :)