Wyatt's Adventures with Chromosome Deletion 3p14.1p13
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Wow!  Things Are Looking Up!

10/23/2012

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Hey there everyone!  I guess it does a little guy good sometimes just to send out a prayer or two!  My mom found several sources and really nice peeps to help navigate the scary paperwork and qualification process!  Our social worker from Stanford called and was so reassuring and kind.  My therapists and teachers all had great ideas for moving forward.  Gramma spoke with a couple attorneys who specialize in Social Security Disability matters.  Most of all, our GREAT BIG HUGE GINORMOUS list of family and friends on Facebook and by phone sent mom messages of love, brilliant ideas and support and helped Mom turn her MAD into MOTION to write a letter about the injustice of the system for little kids like me.   Mom spent hours on the phone learning more about how we can move ahead and take care of all my needs without going crazy!  THANK YOU EVERYONE!

Having a kid like me means life is a big adventure.  Sometimes the adventures can be thrilling and miraculous.  Other times they are terrifying and we feel like we are standing on the edge of a cliff about to give way at any minute.   I guess we are learning to step back from the edge and turn around.  When we do that, we can see how many people are standing there behind us.  Even my big brother, Carter is always good for a hug or two!

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SHARING THE TOUGH TIMES WITH THE GOOD TIMES

10/19/2012

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Well, that just takes the cake.  Here we are, having so much fun and making such great progress, and Mom just found out that after a seven month application process, we were denied assistance from SSI.  How could we possibly make too much money to qualify when eat peanut butter and mac 'n cheese so often?  How can they possibly ask Mom to QUIT her job in order to qualify?  How would I have insurance for all the big huge medical stuff coming up over the next few months if she quit her job?  Don't they see her waking up at 3 am to go to work at Starbucks, just so I can have coverage?  I don't think I have ever seen Mom so mad.  She cried and said a lot of words I don't suppose I am allowed to repeat.  I don't know what it all means, but I know that in order for me to receive medical treatment, therapy and my special school, Mom has to do a lot of paperwork and go to a lot of appointments all over the place.  I guess I can see why she is so frustrated.  There must be someone who can help her figure out what to do next.  If a boy like me can walk, then there are miracles all around us.  Please someone send a miracle to my Mom and to any other family who needs help with their special little kid's paperwork!!
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WHAT A CRAZY DAY!!  MIRACLES DO HAPPEN!!  WOO HOO!!!  

10/5/2012

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After the Audiologist, it was off to therapy in Hollister for me.  Just wait until you hear what happened next!
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        PART ONE - EARLY AFTERNOON

So after working my butt off learning how to use my new walker, I finally got to take it home today!  For a few weeks, my crew at therapy have been helping learn how to obey the speed limit and resist the temptation to lean forward and race everywhere.  Spoilsports.  I also learned to stop and turn and maneuver all over.  What fun!  I really, really like being free enough to move on my own without crawling.  That stuff is hard on the old knees!  Here is a video of me using my little red walker:
                                             

                                            PART TWO - EARLY EVENING

So far a busy day for little old me, right!  Well, that's what Mom thought, too, but there were more surprises when we got home!  I usually like to hang on to the furniture and scoot around the living room looking for adventure, but you know, hanging on to the couch kinda limits a guys range.  I decided to let go...and WALK across the room.  WITHOUT MY NICE NEW WALKER!  Hey, you know what?  I LOVE it!  I am FREE!  I walked to my DAD.  I walked to my MOM.  I walked across the floor over and over!  I LOVE IT!  WHAT A COOL FEELING!!  Mom cried a lot.  I just don't get women, do you?  ANYWAY, TEN DAYS BEFORE MY 2ND BIRTHDAY AND I CAN FINALLY WALK THE WALK!  YAHOOOOOOOO!!  Here is a video of me cruising!
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Checking Out the Ears - What a Surprise!

10/2/2012

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Today we went to Los Gatos to visit the Audiologist for the first time.  We were referred to the ear specialist by the Neurologist, just to make sure everything is working as it should be.  Surprise!  They found one of my ears was completely filled with fluid and the other was unresponsive.
Wow!  So the next step will be to consider tubes in the ears..they thought perhaps with my reflux/swallowing/aspirating issues, the fluid does not move like it does for others so the tubes may be a big help!  They will also schedule an ABR, Auditory Brain Response test.  This explanation is from the American Speech-Language-Hearing Association:

"The auditory brainstem response (ABR) test gives information about the inner ear (cochlea) and brain pathways for hearing. This test is also sometimes referred to as auditory evoked potential (AEP). The test can be used with children or others who have a difficult time with conventional behavioral methods of hearing screening. The ABR is also indicated for a person with signs, symptoms, or complaints suggesting a type of hearing loss in the brain or a brain pathway.

The ABR is performed by pasting electrodes on the head—similar to electrodes placed around the heart when an electrocardiogram is run—and recording brain wave activity in response to sound. The person being tested rests quietly or sleeps while the test is performed. No response is necessary. ABR can also be used as a screening test in newborn hearing screening programs. When used as a screening test, only one intensity or loudness level is checked, and the baby either passes or fails the screen."


This is really exciting news!  What if my hearing has been affecting my speech and balance?  What if the Audiologist can help me hear better and I can speak more clearly?  Can't wait to see what happens next!

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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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