The weekend of July 12 Justin flew to Orlando, Florida to attend the American Nystagmus Network (ANN) Conference.  The conference is held in various locations every other year and a few months ago we decided Justin would attend solo this year on behalf of our family as I would be 8 months pregnant at the time.  Justin was only 1 of 3 attendees who attended solo and while he said there were some awkward moments, he definitely thought the conference was well worth it and came home feeling encouraged.  The conference started Friday evening with a breakout session.  Justin attended the one for parents of kids with nystagmus followed by a dinner event which was really just networking for a few hours.  Saturday morning started with Dr. Hertle as the Key Note speaker via Skype followed by three breakout sessions throughout the day and again a networking hour in the late afternoon.  The breakout sessions were all excellent topics and we wish Justin had been able to attend all of them.  However, choices had to be made so we decided it would be best for Justin to attend the Everyday Living With Nystagmus, Building Confidence in Children, and Teen Panel sessions.  Justin took good notes even though I wasn’t able to attend, I felt that our whole family did and really will benefit from Justin’s attendance at the conference.  Justin got a chance to meet others with nystagmus and parents of children with nystagmus.  He even came across two sets of twins where one twin had nystagmus and the other did not.  He got to hear first hand the personal experiences of children with nystagmus and their parents.  Justin was really encouraged to hear and see that most the children really did thrive.  Yes, nystagmus is a challenge but it is not a limitation, just a challenge and ALL kids have challenges in some shape or form.  

Some of the children had had surgeries to correct their null point and dampen their nystagmus while others had not.  Some kids and parents felt that there was some improvement but overall nothing significant.  A lot of the kids who had surgeries to correct their null points had to have multiple surgeries.  And some kids eye movement was more noticeable than others.  Justin did hear that a lot of the kids nystagmus did dampen with time regardless of having surgery or not having surgery.  He also heard that a lot of the kids who had light sensitivity said that it got better over time.  Although many of the children’s experiences are similar (especially more so in the social area), I would say that each child’s experience is different (again medically, socially, emotionally).  Medically, Justin and I think the next logical step in the process is to take Avery to see Dr. Hertle, likely sometime in late Fall/early Winter.  We’re not sure at this time if we would have him do the surgery or not; however, we do think it is important to get his viewpoint on Avery’s particular case.  With regards to the social and emotional aspect, we’ll be constantly addressing them with Avery and others throughout her life and while it won’t be easy at times, I know we can handle it and I know Avery is going to be perfectly fine. Statistic say that 1 in 3000 persons have nystagmus, which is somewhat hard to believe considering I have never met anyone else with nystagmus and I had never heard of it before, and I would say that probably is the case for most.  Anyway, I do think that our family will attend future conferences as nystagmus not only affects Avery but our whole family and we are in this together as a family.

Justin took a bunch of good notes at the conference and I was going to include some of them, but after reviewing them I decided that it was more important to note here that we should go back and read not only Justin’s notes but the few material hand outs a few times a year so that we continually make sure we are putting them to practical use.  Note to self: the notes are in Avery’s medical binder notebook.