Wednesday, May 1, 2013

Look at me!!!!!

I have had the best month ever!!!  Lots of people use that phrase, but I'm serious, this was the best month of my entire life!!  Let me tell you why.

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I bet most of you have never seen me laugh or smile, well, here's proof that I do sometimes

About 8 weeks ago my brain doctor wanted to try me on some new medication.  I wasn't responding very well to my current stuff, I still had really bad chorea, (seizure like movements), and bad tummy pain (I had to fart but couldn't... it sucked!)  Everyone decided to try me on this medicine that hasn't been used very much in people my age.  it has been really successful with people that are older and have something called hunting funs disease (huntingtons).  Well after about 6 weeks my body really started to get used to the new med... and I LOVE it.  I no longer feel like I'm having seizures all the time, and I can mostly fart at will (just like daddy).  Now that I'm not dealing with those problems as much, I have started to discover the world around me. Here is what mommy and daddy say they have learned recently.

I love to be tickled:
Did you guys know that my neck is SUPER ticklish?  And if you tickle it I will laugh, smile, then try to push you away!  I didn't know that either.



I'm not scared to punch someone if they tickle me
Too much

I love to be around other people, especially other kids:
Sometimes mommy will let me go play with the neighborhood kids around me.  I wish I could run around like them, but at least I get to watch them play, and thats really fun.



I love the outdoors:
Not only has my body felt a little better lately, but there have been a few days (only a few) of nice weather.  I decided that I really like the spring time.  I can't stand being locked in the house all day every day.  Mommy takes me outside and lets me catch some rays whenever the weather is good, and dad usually takes me on nightly walks.  Also, Daddy take me over to the swingset and lets me swing.  I didn't like it at first but I'm starting to really like the back and forth motion.  I was even going higher than some of the other kids at the playground the other day!!!



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My friend Maylee is laughing for me in the background!



I love toys that blink and make noise:
Obviously I can't be playing with RC airplanes, and tool kits like my dad tries to make me do; but I really like flashy toys that play songs.  Daddy adapted my favorite lantern toy to work with a special switch that I can push.  Its my favorite thing to play with now, because I can control it.  Thanks so much to my angel buddy Ethan for the switch.  He is back in heaven now and his mommy is letting me use some of his old toys.

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I'm a lot smarter than anyone gives me credit for:
I am missing a couple parts of my brain.  I'm not supposed to have any fine motor ability, be able to hold my head up, sit up, talk, or eat through my mouth.  A couple of my PCH friends have learned to do a lot more than anybody expected of them, so dang it, I'm going to do the same.  I can already push buttons, punch my M&D when they tickle me too much, pull my feeding tube out when my tummy hurts, and mommy and I have our own language... she always knows what I am saying!  Plus, M & D think its an accident, but I can say mom (mum actually), soon enough I'll have dad down too.  I'm going to keep working and eventually be able to do the rest of the stuff I mentioned that I'm not supposed to do.

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Sorry for the low quality videos, my daddy only has a phone video camera


On top of all these things that I learned, as always, I got to travel this month.


The Wince family took me all over the world with them.  Here I am in Niagra Falls Canada with Gavin.  Thanks Gavin!

I love the beach!  Here I am at Copacabana beach in Rio De Janeiro, Brazil with Gavin and Pam Wince

While in Rio, Gavin showed me the famous "Christ the redeemer" statue on Mt. Corcadova

I got to go up to the observation deck of the empire state building with James Schlemmel.  All the people down there look like ants!!!