Hearing ticker

CafeMom Tickers

Monday, July 1, 2013

FFB Conference/DC Getaway

This past weekend, Blair and I planned a trip to go to the Foundation Fighting Blindness 2013 Visions Conference. Since it was held in Baltimore this year, and my good friend Noelle and her husband Kevin live in Arlington, VA (an hour or so away), so we figured we would kill two birds with one stone and stay with our friends while attending the conference. We also had another couple friend, Stephanie and Brandt, who made the trip up there with us for a little vacay. It was nice to spend the weekend with my childless friends. As much as I love talking about Hunter and talking to other moms about their children, I enjoyed the typical adult conversation where Hunter's name didn't come out of my mouth every 5 minutes. (just every hour or so!)
We got there late Thursday night, after a little gate mishap, right Steph? ;) and left yesterday morning. Kevin and Noelle are the ideal hostesses. A souther lady and a southern chef, what more could we ask for? Their new house truly felt like our home away from home. I don't think I went to bed before midnight every night, but it was worth every minute of catching up.

Blair and I woke up early Friday morning to head to Baltimore. We got there early so had breakfast and walked along the water in downtown Baltimore while doing a little shopping.
The opening luncheon was accompanied by an amazing guest speaker. His name is Craig MacFarlane and he has a website called He lost his vision at the mere age of 2 1/2. He went completely blind. He turned his vision loss into inspiration for the world. Craig went on to become a world-class athlete winning over 100 gold medals in a variety of sports (the majority against sighted competition) including wrestling Internationally on behalf of his native Canada, downhill skiing, water skiing and track & field. He is a magnificent motivational speaker and makes you really change your perception on blindness. I will never forget what he said for those parents out there with blind children- he said his mother didn't know how to raise a blind child, so she just raised a normal child. And that really hit home for me. He said not to limit our children, not to try and protect them more than a regular child because it will give them more independence, which is something that blind people lack the most.
Here is a video talking a little more about his life, it's truly worth taking a moment to watch.
After the luncheon we broke into different sessions, one being an Usher Syndrome group where I actually got to meet a few of my fellow members of the Usher Syndrome Coalitions Board of Directors and Governmental Relations Committee. They talked a lot about genetic testing and the basics of Usher Syndrome, including the different types. They opened most of the session up for questions, which was nice. So I asked the doctors if there was anything at all that I should be doing with my 2 year old who has already been diagnosed with Usher Syndrome, 1C. They said at this point, he is too young for any types of Vitamin A treatments or any real extensive exams of the eye because at age 2, patients still need to be sedated to be given the test. They also pointed out that a well balanced diet is the most beneficial thing for a child right at his age.
The next session we went to was on Vitamin A treatments for patients affected by retinitis pigmentosa (the vision loss aspect of Usher Syndrome). The doctor who spoke for this session developed the treatments and truly has the data to back up his success in his patients. While other organs can be affected by these accelerated doses of Vitamin A, such as the liver, he does not allow patients with any liver issues to received the treatment, and he does not recommend more than 2 alcoholic drinks a day by anyone receiving the treatment. Now this treatment cannot be given to anyone under 90 lbs, so this is not anything that we would be able to look further into for a few more years, but it was nice to actually be able to hear the doctor talk about it.
I'm not sure if the travel or the baby was giving me headaches, but when I woke up with one on Saturday, after having one all day Friday, we were sure we weren't going to make it to the second day of the conference. The drive on Friday took a toll on us, and driving Noelle's car made me a nervous wreck. So we decided to spend the day in DC with our friends, and it couldn't have worked out better. We feel like we got all the information we really wanted on Friday, we got better educated, but we also know that Hunter is too young for anything at this point.
Here is a picture of Blair and me in Baltimore.
When we got back to Arlington Friday night, my WONDERFUL friends had a Baby Harrison Celebration dinner for us, and it was absolutely perfect. I have some pretty great friends :) PS. Harrison Charles is the new baby's name!

Brunch near the Eastern Market in DC on Saturday
A little sun :)

And dinner on the water in Georgetown Saturday night at an amazing restaurant called Farmers, Fishers and Bakers. I HIGHLY recommend this place for anyone in the area!
And back to real life on Sunday. It was a great trip all around!