It's pretty wild to think about how much has happened since my diagnosis a year ago.  Last November I was just getting the hang of sitting.  In fact, I could not get from a laying position to a sitting position on my own.  I could not roll or crawl.  I was not babbling as much as I am now.  I could not lift my arms above midline.  My fists were so tight I opened my fingers very little, and nobody even knew about my aspirating!  Initial testing showed me to be operating at about a six month old level!  Holy Cow!  When I think about all that we have accomplished in just a year!  Pretty darn fantastic!   Here is a photo of me at therapy, running around and playing ball with my OPEN hands!  All the hard work has really paid off!

Mom says we are not done yet, however.  No rest for this little guy, I guess!  That's ok.  When I slow down, they have time to dress me up in silly outfits.  What is the purpose of a tie?  It's like a very skinny bib! 

The next adventure for me will be an EEG scheduled by the Neurologist over the next couple weeks.  Mom & Dad have noticed a few times lately when my eyes look sort of odd, perhaps like I'm daydreaming, or staring off into space.  Because of my high risk for seizures with this Chromosome Deletion, it is important to make sure I'm not experiencing mild ones.  So far I have been very blessed in that I have not had this issue to work on and we are all really hoping that it stays that way!  I also have a BAD flu, so perhaps my staring is related to my queasiness.   Always better to be safe than sorry.  Each time we do another type of test, it sometimes feels like a real pain in the diaper region.  But with very few cases to compare my experience against, we are CREATING knowledge as well as ANSWERING QUESTIONS.  Bring it on, Doc!  Give me one more opportunity to show you that I'm doing great!

Take it from a little guy who knows a lot about these things:

Life is so much more fun with an ATTITUDE OF GRATITUDE!

Blessings to all and thank you for supporting me and my family in our adventure with this missing chromosome.  Woo hoo!  What a ride!  Love you!

So, look out world, I am definitely feeling better!  Yay!  The effects of the surgery wore off and I am back to my usual craziness!  Mom, said puppy love was all I needed.  This is my new baby puppy, Holly.  She thinks I am a chew toy so sometimes she's annoying, but she sure knows when a guy is feeling low and distributes those puppy kisses with great enthusiasm!  Talk about LAB work!  There is a really good article about animals and special needs kids on parenthood.com. 

http://www.parenthood.com/article-topics/how_animals_help_children_with_special_needs.html/page/1

I also found a article about a Labrador named Bennie who helps his autistic friends!
http://www.dogster.com/the-scoop/labrador-retriever-bennie-helps-autistic-boys-find-a-better-life

Do any of you have special pets, companion animals or service animals?

Another milestone this week.  Three days after my ear tube & test adventure, it was my first day to ride the BUS to preschool.  Since my special school is quite a drive for Mom, and sometimes it's hard for her to arrange her work schedule for me to go, the school suggested I may be able to ride the cool kids' bus!  Mom was not so sure about the idea, me being a little guy and all.  She took a picture as the bus pulled away with me inside.  Here is what she wrote:

"Wy's first bus ride to school. Just him & blankey. Most likely his last because mom is about to have a melt down and heart failure."

Well I loved it!  The driver was really nice!  I had lots of big windows to look out of!  I felt so grown up!  Really, Mom, If it helps you out..I think I can handle it! 
Of course, you could always get me my own car....problem solved!

What a day yesterday!  Wow!  We met Gramma at 6 am for coffee and the hour long drive to Lucile Packard Children's Hospital  Not only did they refuse to buy me coffee (what's up with Gatorade and Jello for breakfast?), the traffic made the drive 45 minutes longer!  Anyway, we checked in on time and as you can see, I had a blast racing through the waiting room at the Ford Surgery Center.

Once inside, I got a little nervous.  Here was one of those funky nightgown things again.  Uh oh.  Mom held me and told me it was all going to be just fine.  The anesthesiologist gave me a little "happy juice" to relax me and make it easier for them to give me the mask that would make me sleep through the surgery.  Everyone was very nice, though, and if I wasn't so groggy, I would have loved flirting a bit more.

On the agenda for the day was the installation of tubes in my ears to help drain the fluid they found was accumulating.  That part was going to be pretty quick, it's a very common procedure for kids of ALL abilities.  One of the common traits for kids with my chromosome deletion is hearing loss or problems.  So while I was asleep, the Auditory Brain Stem Response test would be performed.  THAT part would take a bit longer.  I really like that the doctors let Mom stay with me until I was fast asleep.  AND I could keep my blankie.  I love my blankie!

Although it seemed like forever to Mom and Gramma, almost four hours later I was all done and in recovery!  SUCCESS!  Dr. Cheng said the tubes were a piece of cake and best of all, the ABR showed my hearing ability to be GREAT.  That means my brain is processing sound normally!  Hallelujah!  I was all ready to go home and see if the tubes made things clearer!

You would think that would be the happily-ever-after part but OH NO!  I made it most of the way home and then started to be very sick to my stomach.  (Sorry about the car, Gramma).  I felt really, really yukky.  I got very hot, pale, shaky and was really out of it.  Mom ended up taking me to Salinas to the ER to make sure I was OK.  My temp was 103 !  A reaction to anaesthesia?  Not sure.  But man, what a day!  We didn't get home until very late.  Mom and the doctors know that because my deletion is rare, they don't really know how I will react to each new situation.  They always have to be cautious and prepared to act, just in case my body responds in a way they don't expect.  Thank you Mom, for taking such good care of me!  I promise to try and let you sleep in!  Thank you also to my peeps up at Lucile Packard! 
High Five Everyone!!

Hi friends!  Did you have a nice Halloween?  I was a dragon and it was really cool to be able to WALK up to the doors like a big kid.  Next year I will be running like my big brother!  By the way, where did all my candy go?  Somebody check Dad's pockets.

Several really important meetings lately.  Another pow wow with CCS and all my therapists and Mom to see how I am progressing and to redefine my goals.  It's really good to see what areas everyone needs to encourage me more in and where I am shining already!

Not so helpful at our appointment with the vision specialist.  I was in a crappy mood.  They put drops in my eyes.  Oh yes, that's a great way to make a cranky two year old happier.  NOT!  Mom was really hoping for more input on how to keep my glasses on.   Look, my face is sensitive, ok?  I'm not TRYING to be ornery.  They just feel YUKKY.  Just like washcloths.  I don't like it...oh, lets be honest, I HATE IT.   I know I'm supposed to wear those darn things.  I know I would walk better and enjoy more of what I'm seeing.  It just drives me nuts and I want to rip the things off the minute someone straps them on!!  Anyone have any ideas?  Gramma found a site that has straps called Head Huggers, which are soft.  Maybe those will feel better. 

On a happier note, surgery scheduled at Lucile Packard Children's Hospital in ten days for my ears, including the ABR test to see how I'm receiving sound.  We are interested to see what they find and if the tubes clear up what I am receiving!  This is really exciting!!!