Wyatt's Adventures with Chromosome Deletion 3p14.1p13
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TIME TO CATCH UP WITH MY FRIENDS - CHEERLEADERS, FEVERS & FUN

5/21/2013

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Hello!  Wow, time does fly when you are having fun!  There has been so much going on that I wanted to take a quick break in the action and fill you in!

Pre-school and therapy have been going great!  We recently participated in the Gifted Games at San Benito High School.  Over 300 special needs kids raced, jumped, threw and just had a blast in general.  The high school students organized and ran the event so I made new friends and tried to flirt with the cheerleaders.  Did you know that cheerleaders are great incentive for a guy to wear his glasses?  Don't want to miss those pretty ladies!

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Although I have been truckin' along and learning lots of new things, I have had a few challenges lately.  Hey, maybe one of you might be able to help a guy out?   If anyone reading this has ever had a little kid like me with a chromosome deletion who gets RANDOM HIGH FEVERS, please contact my Mom.  A couple times my fever was over 102 suddenly and with no other symptoms or warning.  We have had blood tests (oh, now that's LOTS of fun), spoke with all the doctors, and now Mom is now keeping a fever log.  She wonders if it is a temperature control mechanism which is shorting out, or perhaps my immune system is immature.  SHE WANTS ANSWERS!  So if anyone has ideas or experience with FEVERS, please pass them along our way!   At least when I am feeling pokey, my friend Coal will snuggle me in bed!

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On the plus side, all the tortuous hours of therapy are paying off!  I'm just kidding, I love my PT and OT peeps.  Here I am looking extremely handsome while using a spoon.  The special angle really helps with my pesky hands!  I'm making progress with grasping and using my finger and thumb - check out my therapy page for some good ideas for exercises!

My vocabulary is steadily expanding and I can repeat lots of words.  Even the ones Mommy would prefer that I didn't!  Hey, she should watch how she talks on the phone!  One of our goals is to push for speech therapy, especially since I am so excited about new words now.  Mom was told that I would not be receiving speech assistance and so she is looking to see how we can change that.  There are lots of laws and rules and systems in place for kids with special needs.  We have been very blessed to be led towards some awesome people and therapies which have changed my life.  Some kids have a harder time finding the services they need.  We want to learn WHAT to ask for, WHAT programs I qualify for, WHO to go to for help when we have questions and WHEN it's important to fight and when we need to just move in another direction.  We hope to post links to programs and websites that will answer those questions for other families so if anyone has ideas for our links page, let us know!

That's it for me for now!  Keep in touch everyone!  Looking forward to summer and all the fun and adventure my big brother Carter and I can possibly find!  By the way, HAPPY 4TH BIRTHDAY TO THE BEST BIG BROTHER A GUY COULD EVER HAVE :)
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    My name is Wyatt Hawkins and my Mom and Gramma are helping me share my adventures.   Typing isn't my thing....YET!

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