Joubert Syndrome Conference

Tilly in the outfit we won at the conference silent auction

The embroidery is from the Joubert Syndrome logo:

"The Faith to believe, the Hope to dream, and the Love to see it through"

Sorry it has been so long since my last update... just got back from my first Joubert Syndrome Foundation conference in Cincinnati and wow! I have never been so inspired and comforted. It was amazing to be in a room full of people that truly know what you are going through! I have never felt such unconditional love and acceptance. Both Tilly and I made some amazing new friends who will be with us for the rest of our lives. I am physically and emotionally wiped out but I promise I will post more including great info I learned and some photos! Until then, take care!

busy bee...

Sorry I have been away from your blogs for so long...I am going to take some "me time" and get caught up soon.

I have had a very excuse though. Over the last week or so, I have been functioning in "Mama Bear" mode. We have been waiting for our lackluster neurologist to notify us of Matilda's MRI and vision test results. After relentless pushing, we received an "official" diagnosis for her - Joubert Syndrome - which is more accurate than her Dandy Walker Syndrome working diagnosis. While it seems odd to say, I am so thrilled and relieved to have a name to put with what we have been going through as a family. Now we are able to fully take advantage of the wonderful support systems and information available to the families of Joubert Syndrome children.

I am currently working on a new blog "Matilda Matters" dedicated just to our journey thus far. It will also share her day to day activities. I thought it appropriate to create a separate blog because the nature of it will be so different from this blog. I hope you will visit this other blog, too.

Until then, take care and have a fabulous week!