An update on the kids, STX 209, Fragile X Advocacy Day, and Fragile X Awareness Day. Lots of short blurbs to close out the first month of 2013!
We have quite a crazy month approaching as we head into February. I'm not sure how much time I'll have to update here - but certainly feel free to follow along on Facebook, Twitter, and Instagram. I wanted to post a few small updates about a few things before we got into the craziness....
Ayden: We are now in the STX 209 open label extension. We have...
Thursday, January 31, 2013
Brief Updates
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Monday, January 28, 2013
Grief: The Silent RAWR
I'm so excited to be sharing the first 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, and she hit me with this first -- a post that quite literally...
Wednesday, January 23, 2013
Speech Video 01/23/2013
Our last speech video was created on December 5. At that time, we were at 24 words and 9 different isolated sounds - all made with little to no issues. I encourage you to go back and watch that video before this one to really get a good idea of the changes. December 5 Speech Video
I took my previous post and started to go through the words he was successful with at the last video when I made this. The words at that time: Ayden, Mommy, Daddy, Issac, Emma, sissy, car, cupcake, turtle, turkey,...
Tuesday, January 22, 2013
Project 365 - Week 3
Another week down, 49 to go! Week 3 of Project 365 is completed (even though this post is a day late). Here's a little snippet of our life from the past week, though one large event is missing - the loss of the diamond from my wedding ring. This event is also the reason this post is late as I wasn't by the computer to upload it yesterday, instead running around getting a new diamond in my ring. Look for the picture...
Tuesday, January 15, 2013
Project 365 - Week 2
Here is the second week of Project 365. As anticipated, I had a few busy days and not as much time to pick up my DSLR which is why I didn't limit myself to only taking pictures with that medium. You can visit the full photostream HEREMy favorite picture this week was probably the most difficult. There is this tree behind our house that I love. Everyone loves this tree...there is just something about it. I've...
Monday, January 14, 2013
STX 209 - Update 4
On Friday we will make our final trip to Chicago for the double-blind portion of the STX 209 trial. In the time since I posted my last update, things went from mildly frustrating to pulling out my hair frustrating. The whole thing culminated last Friday with me taking time to go into school and observe Ayden to see if we could brainstorm some ideas as to how to deal with everything. (bear with me while I try to organize what led up to this)Over the maintenance portion of the trial we slowly saw all the good...
Tuesday, January 8, 2013
I Heart Faces | Best Face of 2012
Just want to note that while my blog is primarily Fragile X related, a lot of photography posts are going to start popping up this year too. This is something I'm adding in for my mental health, a little getaway from the challenges of living with Fragile X and just being a mom in general. I've come to realize that taking care of my mental well being is very important to caring for my kids and even more critical being a Fragile...
Monday, January 7, 2013
Back At It!
Holidays from school are such a bittersweet time for me. I adore having more time with Ayden. I still feel a little like I was robbed of time with him by sending him to school so early. I mean, the main point of being a stay-at-home mom is to spend time with my kids. I know sending him was the right decision, doesn't change the fact I miss him though. So..holidays. I love them because of that extra time with Ayden, but hate them because it also puts him into such a funk to have his schedule...
Project 365 - Week 1
My first seven days of Project 365. You can click the image below to go directly to my Project 365 photostream if you would like to see the full image.
This past week I was working a lot with natural lighting and all manual settings. I've slowly been switching to manual use on my camera since Emma was born, but this week I even went with manual focusing. I could really tell the difference by the end of my first week...
Tuesday, January 1, 2013
Happy New Year!
2012 was a great year for us. While every year has its' ups and downs, this one had some very UP highlights for our family. Most notably, Miss Emma joined our family.
There are many other things I can highlight, but I just decided to use pictures to tell our story this year instead. I hope the next year is just as memorable.
As most others, I do make resolutions for the new year. I read an article...