I'm not a complainer. I see things that arise in our life as challenges to be solved. I have a list I check each time we have to look at what to work on, an IEP, a behavior etc. That list helps me to prioritize, solve the challenges in a way that works best for Ayden and for us. So for me, every second spent complaining is one less second spent solving a challenge. And the more time spend solving is less time enjoying life. I have been struggling the past few months, though. A lot....
Wednesday, November 19, 2014
Tuesday, July 22, 2014
14th Annual Fragile X Conference - Part 1
I arrived back on Sunday from what was the most fun filled, emotional, information packed week I've had in quite some time. I want to share a lot of the information I learned, but putting it into coherent structures is quite difficult so hopefully this makes a bit of sense!
The conference started off with a medications discussion with Drs Randi Hagerman and Liz Berry-Kravis. Not much of this session was new to me because...
Wednesday, May 28, 2014
Becoming Mrs. Rogers Blog Tour!
I'm so excited to have a special blog tour on A Day at A Time today in celebration of a book that is sure to become a must-have for any family living with fragile X syndrome.
There are so many people that have held my hand the past 3.5 years as we have braved this fragile X journey, but Cindi is always one that has offered steady, thoughtful guidance to myself and so many others. Her advice isn't learned in school or read...
Friday, May 16, 2014
Never underestimate the persistence of a little boy...
You would think in my seven years knowing him I would have learned never to underestimate Ayden by now. Yet, sometimes I forget and he has to gently remind his Mommy that he can overcome even the milestones that I don't think he's ready for yet.
For this story...let's skip our second. Issac will be starting school in the fall and for our part we have shied away from night time potty training. We like our sleep. A...
Tuesday, March 25, 2014
Feeling Frustrated
It isn't often I put down frustrations on here - but I'm feeling a bit overwhelmed with them right now. Back in the update for Emmalina, I posted about how we were having an OT out to evaluate her sensory issues. I sat with the OT who basically did a sensory evaluation by asking me questions and very little observation (NO interaction) with Emma. At the end, she told me Emma is a sensory seeker but seemed to be self-regulating so her issue were not affecting her everyday life. She did not recommend any...
Thursday, January 23, 2014
Update on the Family Part 3: Issac
This should be the easiest of my updates, no worries about any developmental issues! Right now though, this little guy is my most difficult child. He is mouthy, stubborn, strong willed, bossy, confident, and exactly a perfect mix of his mom and dad. You know that kid your parents always tell you they can't wait that you have - Issac is mine. The daily grind with Issac usually consists of him bossy his brother and sister around, a lot of tattling, and a lot of telling mom and dad how he thinks life should work...
Tuesday, January 21, 2014
Update on the Family Part 2: Emmalina
I was looking back over posts to figure out when my last update on Emma was, and found most of my recent posts had been about STX209. So we'll start fresh today!Emma will be two in about 2.5 weeks. As you know from reading previously, we have had her in early intervention since about 6 weeks old. She started with just physcial therapy and a general developmental specialist. At 10 months we added in speech therapy and dropped physical therapy. Now, at 23 months old we are doing one final evaluation...
Friday, January 17, 2014
Update on the Family Part 1: Ayden
I've taken a long hiatus from the land of blogging. I feel like there is not a lot to say most days that isn't a repeat of what has been said already. I am inching in on three years of blogging here. Yikes. I want to start posting more. Our life and how we live with Fragile X changes so often, and keeping up with that for newly diagnosed families is important to me. I want to continue to be a springboard into the lives of those that are just hearing Fragile X Syndrome for the first time. Even for...