Summer 2017

Connor made a new friend at
the JS Conference

The Dean family had a very busy summer!  Here are some highlights from Connor’s world…

We attended our third Joubert Syndrome Foundation Conference. Families, doctors and researcher from around the world came together for four days of networking, support and learning. It’s always an emotional and draining time for me. We meet other families, see the wide spectrum of Joubert Syndrome and hear their stories. We go to lectures and try to understand the complexity of the human body. We attend workshops and parent groups in hopes of learning about a new idea or form of therapy that would give Connor the best chance at making progress.  But it’s also a life giving time. No words can describe how it feels to be with a group of people who “get you” in ways that other friends and family just can’t.

Less than thrilled with the Spio suit

Connor has added a Spio suit to the line up of contraptions we make him wear. The hope is that the suit will provide enough pressure and feedback especially in his trunk and shoulders to make him sit up straighter and work those muscles harder. Luckily, his therapists have said he can wait until cooler weather to start wearing it!

Trying out the new talker

The long awaited and worked for augmentative communication device has arrived! We're thankful for medical insurance that covered a good chunk of the cost, but WOW - definitely an expensive piece of medical equipment that most mistake for an iPad. We are still customizing it, but we are hoping Connor will use his “talker” to share with the world what a smart, funny and kind boy he is. We also got a wheelchair mount for it so it will be more portable and he can use it in a wider variety of settings.

With sissy on the first day of Kindergarten!

On August 16^th Connor started Kindergarten!  He was excited and showed no fear or anxiety. We decided to mainstream him at our local school. The teacher, new aide, therapists and other school staff are appropriately overwhelmed with him.  There is a lot to learn and adapt when Connor enters the scene.  So while we are still trying to figure some things out, I’m confident their hearts are in the right place.

Showing off his lost tooth

And finally, another rite of passage – Connor lost his first tooth!  He keeps sticking his tongue in the hole and thinks it is quite funny we only count up to nine now when we floss his bottom teeth.  The new one is already growing in and a neighboring tooth is loose. 

More soon! Thanks for your continued love and prayers.