I have this moment that I remember very clearly from when Ayden was an infant... We were helping my younger sister move from her apartment, and I had offered to take my niece (my older sister's daughter) overnight. Her and Ayden are about five weeks apart. So I'm sitting there in this apartment filled with boxes while the guys are packing up and playing with my niece and Ayden when I clapped and said "yay!" for something she did and she looked at me and clapped right back. It wasn't something new for...
Thursday, December 27, 2012
The Moment
Read More...
Wednesday, December 26, 2012
STX 209 - Update 3
I know this post is crazy overdue...but other things keep requiring my attention this holiday season. Now that it's almost over and I have a few minutes to breath..(who am I kidding there? I never have time to breathe!)My last update was in mid-November, almost six weeks ago. We have been on the "maintenance" portion of the trial for a while now. This means we have been on a steady dose of whatever level of drug (or placebo) we were assigned to in the randomization. Behaviorally..Ayden is doing okay....
Wednesday, December 19, 2012
2012 WEGO Health Activist Award Nomination
I was nominated for a 2012 Wego Health Activist Award in the Advocating for Another category. If you would please take a few minutes to "endorse" me I would greatly appreciate it. I would love to see Fragile X get more recognition, and these seems like an awesome way to do it! Anything that brings more awareness to our community is great news for all of us living with Fragile X and especially for those that are not yet diagnosed and struggling for answers. You can click on the green "Endorse Me" button...
Monday, December 17, 2012
Twenty Acts - Making Sense of a Tragedy
I've lived through so many horrible, senseless tragedies, but none that have just shattered me as this most recent one. I found myself glued to the computer and updates as the story unfolded. I read the first report of an entire kindergarten classroom unaccounted for and the tears began. Little kids, the same age as Ayden...and by all account more than likely not survivors. By now, we know this to be true. That...
Wednesday, December 5, 2012
Speech Video 12/5/2012
It has been about two months since I made the last speech video for Ayden. I sat down to make another one today. We are now at 24 words and able to isolate at least 9 sounds. Last time I did this on 10/10/12 we were only at 14 words, no sound isolation, and no attempts to imitate. You may also remember we have since that time started on the STX 209 trial (our start date was 10/29)
I have more to add about STX 209..but that will be another post. We are in the maintenance portion of the...