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A Kyle Funny by Kristie Meyer Patient Expert Posted in: Blog Posts in Genetics My sixteen-year old nephew,  Kyle has different sensory issues than my kids. He is riding with us to ARC camp today.  He was siting on the couch watching me put my hair up. ... Read on »
Conversations with my kids by Kristie Meyer Patient Expert Posted in: Blog Posts in Genetics Conversation with Blake:   http://youtu.be/xVrlbJTQVeg .  Conversation with Drew: http://youtu.be/ryqqNC0hBxU Read on »
Temple Run reenactment by Kristie Meyer Patient Expert Posted in: Blog Posts in Genetics Temple Run is big at our house.  Tonight, Eric and Blake reenacted it on the sidewalk in front of our house. After a few runs, Blake said he needed some water.  H ... Read on »
Blake's pet rock by Kristie Meyer Patient Expert Posted in: Blog Posts in Genetics We have a rock that holds the porch door open.  This evening, Blake decided the rock was his pet.  We washed him up so he could play with it.   http://youtu.be/p5Ws6 ... Read on »
Today is Fragile X Awareness Day by Kristie Meyer Patient Expert Posted in: Blog Posts in Genetics I am not going to write a sappy post about how I feel about Fragile X.  Today I am going to share the FACTS about Fragile X.  Read this graphic for a good primer on Fragile ... Read on »
Happy Birthday Drew by Kristie Meyer Patient Expert Posted in: Blog Posts in Genetics Wow, Drew is THIRTEEN years old today.  Here he is through the years: Read on »
Summer with the X-Men by Kristie Meyer Patient Expert Posted in: Blog Posts in Genetics Well, we have our first month of summer break over.  It has gone so fast! We've completed another season of Sluggers Little League.  It was once again a great experience for ... Read on »
Our STX209 Story by Kristie Meyer Patient Expert Posted in: Blog Posts in Genetics For years we have been asked to write a vision statement for Drew's IEPs.  We always write something to this effect:  "We would like Drew to meet his full potential and beco ... Read on »
Changes-nine days later by Kristie Meyer Patient Expert Posted in: Blog Posts in Genetics Last week, things were bad.  I emailed Dr. Berry-Kravis about a rescue prescription for Drew as he weans off the Arbaclofen.  She prescribed Racemic Baclofen to help ease th ... Read on »
Changes by Kristie Meyer Patient Expert Posted in: Blog Posts in Genetics We are on day 9 or 10 of the weaning process of Arbaclofen.  It stinks, guys.  I tried to be positive about it and hoping it wouldn't be that bad.  But it is.  Really. Dr ... Read on »
This is my life by Kristie Meyer Patient Expert Posted in: Blog Posts in Genetics There have been times in my life when I have been what I call, "fragile x'ed out".  That means our lives have been super-immersed in Fragile X.  I get tired of talking and t ... Read on »
They say all good things must come to an end.... by Kristie Meyer Patient Expert Posted in: Blog Posts in Genetics ...but I wasn't planning on this good thing coming to an end.  Two nights ago, I came home from bible study.  My sister Kelly and I were in the kitchen talking to Eric.  He ... Read on »
Woody is home! by Kristie Meyer Patient Expert Posted in: Blog Posts in Genetics Woody and Buzz Lightyear have been missing from our home for two weeks or more.  We've looked everywhere!  I mean everywhere.  Today, I said to Eric, "Don't you wonder where ... Read on »
The process of making a schedule by Kristie Meyer Patient Expert Posted in: Blog Posts in Genetics Drew loves his schedules.  He depends on them.  If he knows something is coming up, he can't relax about it until we've put it on the schedule.  We use Boardmaker Studio to ... Read on »
A boost of self-confidence by Kristie Meyer Patient Expert Posted in: Blog Posts in Genetics Drew has a bad habit of saying, "I can't!"  He says it a lot.  He'll ask for more milk, so I'll say, "sure, why don't you get out the jug?"  He oftentimes replies by saying ... Read on »
Sleep Issues and the X-Men by Kristie Meyer Patient Expert Posted in: Blog Posts in Genetics For us, one of the most frustrating things about Fragile X in the early years was sleep difficulties we had.   I say "we" because a child doesn't have sleep issues by themse ... Read on »
Playing in the snow by Kristie Meyer Patient Expert Posted in: Blog Posts in Genetics On Tuesday afternoon, Drew said to me, "Can I play in the snow when Daddy gets home?"  I said, "You want to play in the snow?  Why not just go out now?"  He said, "No, I'll ... Read on »
Why I love Drew's classmates by Kristie Meyer Patient Expert Posted in: Blog Posts in Genetics Today the sixth graders decided to do a flash mob in the lunchroom.  I am not sure how they talked the teacher on duty into letting them do it, but all of a sudden, some rap ... Read on »
Some Blake pics in different sensory modes by Kristie Meyer Patient Expert Posted in: Blog Posts in Genetics Blake is a sensory boy.  He is a seeker most of the time, but sometimes he likes to block everything else out.  The tunnel is good for this.  Here he is busting ... Read on »