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Wednesday, July 31, 2013

(Semi) Wordless Wednesday

This summer has been filled with lots of outside time with family and friends, and lots of swimming for our little fish! Hunter is so lucky to have such involved grandparents, cousins, aunts and uncles! Blair and I are too :)

 Cajun Palms- July 2013

For those of you who know Hunter sleeps with a stuffed Santa every night (equivalent to his baby doll- I even caught him signing the ABCs and 123s to his Santa the other night in bed... then saying OK? OK!) Needless to say, he loved the "Christmas in July" camper at Cajun Palms!

This past weekend we went to Blair's friend Chris' camp at Lake Dauterive, and Hunter loved being in the boat because every time he sees any body of water he says "OOOO da Bayou- Boat pass Bayou!" Whether it's a river or the beach, to him, it's all the bayou :) 

We are working on smiling, for now "Cheese" comes out every time I try and take a picture. Sometimes it's over exaggerated (above) and sometimes I catch the end and get a good smile (below) 



And we have been spending lots of time in our yard. It's very nice in the morning and after 6pm. So glad the sun sets on the other side of our house so it's not scorching when we go out there!

A little pedi...

A little cleaning house...

And a little watering the flowers...

But really making a mud pit. Either way, the hose went a long way :)

We aren't ready for summer time to end, but we are ready for fall like football weather. 

Baby Harrison Charles Faucheaux is 21 weeks and kicking (literally, all the time). Hunter calls him "Barson" but we are working on it...Hehe, it's kind of cute. He seems excited to become a big brother! 

I can't believe it's almost August already... time is flying by!


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 cmpride.com. 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!