Thursday, July 30, 2009

the conference

Wow, what a conference! Overall it was amazing and I was much better emotionally prepared this time than in 2007. (Thank you for your prayers and warm thoughts...greatly appreciated.) And I must admit a few gin and tonics during the weekend helped too! :)

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! :)

5 comments:

Eva Nichole said...

You know whats funny is I broke down more this time then I did 2 years ago...LOL!! I think I was more awake this time since we did not go to Disneyland right before the conference.
It was great seeing you and getting a big Amy hug when we saw each other and when we left.
Hugs,
Crystal and Eva

Kurby Family said...

It was wonderful meeting you and Max. I am so glad our paths crossed. You are both very special people that will always be in my heart. I can't wait to see you in 2011!

hannah m said...

So glad to know you had a positive experience, though I can imagine and understand how overwhelming it must have been, too. I was bummed all weekend that Vince, Viv and I weren't there...(And girl, I am all about the gin and tonic!)

Carolyn said...

Glad everything went well. Hope it wasn't too stressful.
Hugs,
Carolyn in WV

mama to jayna and ryen said...

there is nothing like having a room full of people that know the same language. at the HME conference, Jayna and i walked around a room full of conversations...we kept hearing snipits: "seizures..", "left sided". "helper hand"...we could have joined any of the conversations and new exactly what they were talking about. oh, sweet connection!