New Beginnings

The lack of blog posts in the last few months is certainly not a reflection of nothing going on in the life of Connor.

Final night at the JS Conference

Certainly the biggest development is that the entire family is now in Illinois.  We are temporarily living in Villa Park, a western suburb of Chicago, as we wait for our house in PA to sell and for Brent to find a job.  It’s good to be together again even when we know the transition isn’t over.

And of course, coming to Illinois meant leaving Pennsylvania and everyone we love there.  “See you laters” were said to Brent’s family, dear friends and our Advent faith community.  As part of his farewell at Carrie his babysitter’s home, Connor added his handprint to their family’s wall of hands.  We can tell he misses her a lot!

In July our family attended the family medical conference hosted by the Joubert Syndrome & Related Disorders Foundation as it was held in Chicago.  With everything going on, there was no way we would have been able to travel to the conference so having it local was a true blessing!  While there wasn’t much new information or research, it was great to connect with families we met two years ago and meet new ones.  The conference had twice as many attendees as last time (from all over the world!) which is so awesome as it means more parents are getting the word that the foundation is out there to support them.

Potty chair session with Elmo

This month has two major new starts for Connor.  A couple of weeks ago we decided to try to tackle potty training.  He enjoys sitting on the potty chair.  I mean, who wouldn’t?  We read books about going to the bathroom, sing songs and watch Elmo Goes to the Potty DVD.  So while potty training has been enjoyable there has yet to be any success. We’ll just keep on trying!

On August 24, Connor had his first day of preschool!  It’s hard to believe he is old enough to be in that world.  He is in a multi-disabilities classroom through our local school district for 2.5 hours a day, Monday – Friday. He has a great teacher and there are several aides in the room.   Connor receives his physical, occupational, speech and vision therapies at school.  Because his direct service time for therapy was cut when we moved from PA to IL, we are seeking additional therapy at a local agency.  Hopefully everything will be set up in the next week or so.

First day of school!

With all the craziness and transition in the last few weeks, we haven’t seen Connor take huge leaps forward in many areas.  He is doing better with chewing though and about half of his food is now “real” food and half puree.  Meals are still often a fight though and we are trying to find the balance between pushing through the crying and entertaining him enough for him to eat peacefully.

Current requests for prayers and good thoughts are for a continued positive experience at preschool and with new therapists and for our family’s continued transition to life in Illinois.