Justin and I took an extended weekend trip to Minneapolis with Avery and Emerson to attend the bi-annual American Nystagmus Network (ANN) conference. Justin attended the conference four years ago in Orlando when I was eight months pregnant with Harper. Attending this year was somewhat of a last minute decision. Avery knows she wears glasses and she knows she has to see things closer up to maximize her vision; however, she doesn’t know that her eyes move and that she has nystagmus. With the conference being every two years, we worried that if we waited until she was going into third grade, it would be too late and we would have missed out an opportunity. On the flip side, we were concerned that we would be introducing her to a concept that could change her outlook when it wasn’t something that was currently bothersome to her. In the end, we chose to go and are happy with her decision.
In terms of medical answers, we didn’t necessarily gain a lot of knowledge….more just some reaffirmation of things we already knew about Avery’s condition. Avery’s case is truly rare and there was not another single person at the conference whose nystagmus presented itself like Avery’s. As the research on the Internet and YouTube videos show, most persons with nystagmus have a horizontal eye movement. Research shows not all nystagmus is horizontal…there is vertical and rotational but again those persons seem to be far and few between.
Nystagmus is not a death sentence like some cancers or other diseases can be. Additionally, it is a symptom…usually the result of another underlying condition, of which there are many, but not always. So while there is progress being made on the research, it is very slow as there isn’t a vested interest to cure the symptom. It also seems that the doctors and scientists who have devoted their careers to this condition, don’t always agree…in fact, it seems that collaboration amongst doctors/practices is not really occurring and there even seems to be some strong feelings of disdain for other doctors within the same exact field of research. Whether surgery helps dampen nystagmus and increase visual acuity seems to be a very controversial topic making the course of treatment a parent seeks for their child that much more difficult to make. Dr. Hertle was not at the conference, for what I believe was to be the 3rd conference in a row. He did appear via a video message but it makes you wonder why he wouldn’t show up for this conference that takes place every other year only if this is the subject for which he has devoted his career. Dr. Avery Weiss, a new name to us, was a guest speaker at one of the sessions. He was quirky and to the point and he was pretty confident that his practice always finds the correct diagnosis. He didn’t go too into his treatments but again he made it clear that visual acuity general doesn’t improve with surgery. They were offering eye movement recordings (EMR) on Saturday. Avery previously had one three years ago, but we figured we would get one again just to have as a reference point. Justin took Avery to do it…it was being administered by Dr. Weiss and Dr. , one of the other scientist who was a keynote speaker. The goggles wouldn’t fit properly on her head and with the direction of her nystagmus, they didn’t proceed with the EMR. Justin did have an opportunity to talk with Dr. Weiss specifically about Avery and interestingly enough in their brief conversation once Justin provided him with Avery’s health history and gave her a visual look over, didn’t feel he had anything additional to offer. In regards to surgery, he said, “he wouldn’t touch her with a 10 foot pole.” And when Justin had indicted our willingness to tack on an appointment to see him in Seattle when we visited our friends, he clearly told Justin to just go visit his friends. He thought Avery’s eyes were aligned and was pleasantly surprised to hear her visual acuity. I still question if Avery has a null point…I don’t think so but the conference made me wonder if perhaps her downward and upward positions of her eye balls were more associated with null points than light sensitivity. Justin posed the question and Dr. Weiss seemed to think it was a light sensitivity. So did we learn anything completely new at the conference? No, not completely. But things were reaffirmed and we certainty took away some good pointers in the various sessions (the teen panel of kids with nystagmus, nystagmus in a school setting, low vision optometry, etc.) and we had a chance to meet other kids and adults with nystagmus, many of whom were quite successful. We met a few families from the D.C area and Avery and Emerson had fun at the kids camp, which was taught by teens with nystagmus and their siblings. Avery does now know the word nystagmus and that she has it and that it means that her eyes move. I have tried to downplay that some so she knows it isn’t a big deal and it doesn’t define her. Time will tell if coming to this years conference was the right timing. I want to say it was, but again only time will tell for sure.
The conference started Friday evening and since we had never been to Minneapolis before (my two night work trip in February at the 3M building eight years ago didn’t really count) we decided to extend the trip by about 24 hours and see Minneapolis. Due to the price and wanting to get the most out of the conference, we opted to leave Harper at home with Janaina and Grandma and Grandpa. We chose to take Emerson since her and Avery are twins and Avery’s nystagmus likely affects Emerson more than Harper.
The weather all weekend was beautiful. Thursday evening we went to Target Field to check out where the Minnesota Twins play baseball. 
Friday morning we went to Minnehaha Park and Falls. 
We debated going to The Mall of America, which is the largest mall in the U.S, just to say we had been there. But with time limited, we chose not to. Now, we can say, we almost went to The Mall of America. Instead we opted for a nice Italian lunch and went to the Minneapolis Institute of Art, which was the number one rated thing to do in Minneapolis and one of the largest art museums in the U.S.
The conference was all day Saturday and when there was a break at 4:30 we took a walk outside to U.S. Bank Stadium, where the Minnesota Vikings play football.
The food was okay. I scoped out a number of restaurants on TripAdvisor. For restaurants that were rated in the top 20 restaurants for Minneapolis, I would have expected mouth watering. They were good but certainly not mouth watering. My favorite meal was probably Sunday morning breakfast at The Hen House where I had an egg white omelette with tomatoes, grilled onion, quinoa, goat cheese, and bacon. The restaurant gave out not only coloring books and crayons for kids, but little goodie bags of fun items.
We did see a ton of food trucks Friday morning along the street where our hotel was on…perhaps food trucks are Minneapolis’s thing.
We missed Harper but we know she had a great weekend with Papa and Grandma. Truly another great trip, less than three weeks after our trip to Sweden. I truly feel so fortunate and blessed with my life and my family right now.