Thursday, November 22, 2012


Hey guys!  Sorry I haven't been updating a lot lately.  Dad has been really really busy at school and he takes his computer with him, so I don't get much computer time these days.  Based on the talk around my house, and some sort of disgusting eating ritual that my parents participated in, I think today is a special day.  I heard mommy and daddy mention "Thanksgiving".  I'm not exactly sure what that means, but it reminded me that I am thankful for a lot of things… even though some days I feel that I have been dealt a rough hand of cards.

Obviously I owe a shout out to my mommy.  As you can imagine I can be kind of a pain in the butt to take care of sometimes, and she does what ever she need to do to get the job done.  She has taken the time to research my condition, educate the many doctors that have never heard of it, and propose solutions that are so brilliant the doctors can't think of anything better… and her solutions usually work.  She spends hours with me trying to teach me the things that normal kids will inherently know, like track an object with my eyes, hold my head up, lay on my tummy, ride in a car seat, and hold her finger.  She has miraculously  taught me more than I ever thought I would do in my 1st year… although its not very much, its more than expected of me.  She spends almost every waking hour with me.  Even though I'm nearly impossible to travel with, she encourages me, almost daily,  to get out of my comfort zone and experience something new.  I know that I'm really hard to take care of, and I make her cry a lot; but I am so so lucky that she is my mommy.  I know she loves me, but I love her back even more!!!

I am thankful for so many cool friends.  I don't know anyone else that has traveled to more than 10% of the countries in the world in their 1st year of life.  I have no clue the number of households that I was able to participate in this "thanksgiving dinner" you talk about, but I have been told by a few people that they wore my shirt to eat turkey today.  On top of traveling I've had the opportunity to go flying, sing karaoke, play with bands, learn to farm, watch sporting events, and so many other cool activities that I wouldn't have the opportunity to do otherwise.  In addition I have received multiple gifts of service or thoughtful items that I now treasure.  I can't imagine life without so many people supporting me.

I am really thankful for the little things.  I've been getting pretty bored lately, ya know just laying on the floor all day.  I love looking at the ceiling fan, but you can only stare at that for so many months.  Earlier this week though, something finally clicked in my brain that allows me to see.  Well I could always kind of see, but now I somewhat understand when I'm looking at something interesting.  Like my mobile thats hanging in my crib.  Its always been there, since the day I came home from the hospital, but I never noticed it.  Now when daddy or mommy turns it on, its the coolest thing in the world.  Here is a video of me watching my mobile.

I'm soooooo excited that I made it to my 1st birthday.  I'm really excited to see all my friends that are coming to my party.  I know that both of my grandparents are flying in for the festivities, and its been a really long time since I've seen them.  I think mommy has a really fun party planned and I can't wait until it happens.

Lastly, I am super thankful for my nurses.  I possibly have the best crew of nurses in Nebraska.  They come to my house at nighttime and hang out with me.  When I wake up coughing or with tummy pain or even needing to be sucked out, they are happy to help me.  They usually know what I want without me even asking.  I'm so happy they can come over at night, because if mommy and daddy had to play with me at night too, I'd be really bored.  They aren't very fun when I want to play at night.  And whenever I play with them at night, they really aren't any fun the next day either.  Thanks nurses I love you guys.

Monday, November 12, 2012

No shave November

I just wanted to let every one know that I support no shave November. Also, my birthday is coming up in a few weeks. Whoa, how am I almost 1 already. I have done so much in 1 year thanks to all my amazing friends.