I haven't done an official update in quite some time. We have been on open label now since January 18 (a little over two months). To say we're happy with his progress may be an understatement! We don't really notice a lot of the behavior changes being around him all the time, but when I look back through videos it's very noticeable so I wanted to share here.We first started seeing Ayden's speech emerge in September of 2012, he was a little over 5 at the time. If you watch him here, you can...
Monday, March 25, 2013
Sunday, March 24, 2013
UNC Infant Study
So, the second part of our trip down south. You can read about the beginning of our trip in USC Infant Study post.
After we finished in Columbia, we got in the car and headed north. Our final destination was UNC, but we stopped in Charlotte to visit with some friends of mine. These ladies are part of a small group of women that met when we were all pregnant back in 2006/2007. I'd never actually met...
Thursday, March 21, 2013
When Your RAWR Goes Silent: Part 2
This is the third of a series of guest posts by my friend Marie at All Things RAWR. I have had the privilege of seeing her help and inspire so many people and just be a positive light in this world when the world certainly gave her a reason not to shine. I asked her to write on a couple other topics related to [Fragile X] carriers, as I mentioned this is the second in the series. Read her first one here:...
Tuesday, March 12, 2013
How Can YOU Help?
I hope you read my post on Advocacy Day. If not, please take a minute to read this before continuing on with this post as it is directly related.
I decided to do another post regarding Advocacy Day because I want to not just touch on what I did, but what our group was actually asking for. I'm not going to cover everything, but want to touch on the Acts and give places to find more information about each of them. These things...
Friday, March 8, 2013
Advocacy Day 2013
Wow. I'm still in awe of how amazing the past couple days were. I was excited for this, I knew what an amazing experience it would be - but I was not prepared for how much more it would be than what I expected.
I arrived in DC on Tuesday and met up with my roommate at the airport. A small thing that I am so thankful for! I had a small knot in the pit of my stomach from the second I left the kids and Mr Awesome...
Monday, March 4, 2013
When Your RAWR Goes Silent: Part 1
This is the second of a series of guest posts by my friend Marie at All Things RAWR. I have had the privilege of seeing her help and inspire so many people and just be a positive light in this world when the world certainly gave her a reason not to shine. I asked her to write on a couple other topics related to [Fragile X] carriers, as I mentioned this is the second in the series. Read her first one here:...