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.

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!!!

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.

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.

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!!!

Create your own travel map - TravBuddy

March Travels

Hey Everyone,

The past couple weeks I have been feeling amazing!!!  M&D put me on a new drug and it has changed how I feel everyday.  Life is actually kind of fun when I'm not always in pain.  Mommy plays with me all day, gives me kisses and tickles, makes me laugh, then daddy gets home and throws me in the air… Its soooo much fun.

I've been so happy lately, mommy even let me play with a friend.  My friend Dillon came over.  He's much younger, but he tried to teach me how to hold hands.  My crazy movements don't let me hold hands for very long, but I think we got it down by the end.

Too bad I get sick soo easily.  I've been in the hospital for the last couple of days because I had a really high fever (105), thats why I finally had time to write in my blog.  The good news is that I'm headed home today. For more details from my mommy, click HERE.

On a brighter note, I decided what I want to do for a career.  I want to do impersonations.  Here are a couple I'm working on.  Do you think I have a future in it?  Any requests, let me know, I'll work on them!

Here is my best "Walter" impersonation.  If you don't know who Walter is, look up Jeff Dunham.

Here, I am trying to act like a frog.  I don't quite have the jumping part yet, but I think I have the crouching part down perfect.

I am so lucky to be able to have so many amazing experiences with all of my friends. I wanted to show you all where I traveled to this month.

The Rigby family (this is my aunt Amy and uncle Jeremy that came up with the Jett B t-shirt idea)
they took me to Newport Beach.

Its a little bit blurry, but I know we all had a blast!!!

The wallace’s took me to Disneyland.  My favorite ride was Buzz Lightyear.  It was Awesome    

Sebastian and his wife took me to The  National Monument Arch, in Valley Forge Pennsylvania    

Rich and Dot Enslinger took me all over the world.   Here are a few of their pictures

Here I am with Rich in Easter Island.  I got to see these famous statues up close and personal

Here we are in Bali Hai (from the movie South Pacific)  This place is so remote I had to do a lot of research so I could put it on my "places traveled" map.  Definitely the most remote place I have been to yet! (I hope Vanuatu was correct)

Next we went to South Africa.  Here we got to do tons of really unique things. First, we played with some really big kitties.  I think Rich was a little nervous, but not me, I love big kitties!

Rich let me feed the Giraffes

Next, Dot and I were introduced to our monkey friend.  He couldn't see very well, so he tried to steal Dot's glasses

We had to first make friends with the elephant

Then we got to feed him

Thanks so much for eveyones well wishes, thoughts and prayers.  I am so lucky to be surrounded by so many amazing people.

Also, I want to give a HUGE SHOUT OUT to JETT MTB.  They made a really cool mountain biking jersey for me.  Over 70 people bought jerseys and are now taking me on bike rides too.  If you have a mountain bike and need any gear, check out their website (www.jettmtb.com) because they have some cool stuff.  (and their name is Jett, so they have to be awesome, right?)

World Champions, Fabian Barrel and Anne-Caroline Chausson, took me with them on the trail. Thanks guys!

On another note, in the coming weeks we will have some really really exciting news to tell you about.  I can't tell you quite yet because M & D would be mad at me, but hopefully soon.

P.S. I don't have any brothers or sisters on the way, so you can rule that option out

Create your own travel map - TravBuddy

My first mini vacation

Last week I turned 15 months old.  Mommy and Daddy thought that I was ready to take on the world myself.  They planned a quick trip to Kansas City Missouri (about 2.5 hours away) with our friends the Bowen's.  They were pretty nervous because I've been pretty grumpy lately.  They don't know this, but I've been secretly waiting for a trip like this for months, so once I heard that they were going to take me I decided that I'd be on my best behavior.  We had sooooo much fun on this trip I can't wait until we get to do something like it again.

Kansas City is famous for their BBQ.  They have more BBQ restaurants per capita (whatever that means) than any other city is the nation.  So we had to stop and try the most popular BBQ joint in town called Oklahoma Joe's.  It was in a gas station and the line wrapped into the parking lot... apparently that is a sign of deliciousness.  M & D tried to feed me some brisket, but they were just joking.  When I opened my mouth to try a bite they pulled the brisket out... how rude are they.

Next, we went to a mall to play on the toys.  They had a lot of really fun toys to play on so dad took me on all of them.

If you know me you know that I love airplanes

I don't know why dad insisted that I go on the bus, but I didn't like it very much.

Next was my very favorite.  We went to a really cool place with loud music, lots of kids, and water everywhere.  It was so wild and crazy I didn't know what to do with myself.  

We started off in a pool that was pretty cold.  I didn't like it at first buy I warmed up to it eventually

Next we went to an area with really hot water called a hot tub.  I LOVED this, I could hang out in there all day

After a long day at the water park we headed to dinner.  Daddy got a suggestion and we tried a Kansas City Local restaurant called Corner Cafe.  Everybody loved the food there, even me.  They brought us out a huge round roll that was covered in frosting, I think it was called a cinnamon roll.  Mommy gave me some frosting to try.  It was soooo good I'm still licking my lips.  M & D said it was the best "home cooking" they had ever had, so it must have been pretty good.  My only complaint is that they didn't have anything on their kids menu that was "feeding tube friendly", so I didn't get to try anything except the sweet roll

I think this thing was bigger than my head!!!

After a long, fun, tiring day we headed back to my first hotel room ever.  I was pretty tired and kind of just zonked out for a little bit. 

I even got to sleep in a hotel. It was awesome, I got my very own big boy bed and everything

When I woke up at night I got to cuddle with Mommy and Daddy, I was in heaven!!!

The next morning we wanted to go visit some Mormon church history sites that are in Independence Missouri.  We saw the LDS visitors center, the community of christ temple and auditorium, and the "temple lot".  The whole place was kind of bizare, but M&D wanted to see it so I came along for the ride.  I did get to see my good buddy Jesus though, so that made it worth it.

I got to hang out with my good buddy Jesus when we were visiting some Mormon church history sites

This was a cool looking spiral building that is near the church history sites

After these places we had to drive to one more place before we could go home.  We went to see Liberty jail.  Its apparently a kind of important place for our church history.  I was pretty tired at this point, so I just kind of wanted to get out of there... although it was still pretty cool.

Here we are in front of a replica of the jail.  

It was soooo much fun to finally get out and travel.  I'm so glad that my body let me venture out and have fun doing this. I kind of understand what all of you guys have been doing when your wearing me on your hearts.  Thanks so much for taking me around the world.  I know I'll never make it  very far in person, but thanks to everyone that has supported me, I'm able to experience these amazing places through you.

Anxiously Awaiting Summer

Wakeboarding season is right around the corner, so you know what that means...I need to get prepared by swimming in the bathtub! Temperatures around these parts haven't been very favorable lately.  In fact, it is so cold that mommy and daddy haven't taken me out very much.  They say that there are too many germs out there still, so instead, they created some fun for me inside my house!  

Tonight, I was a big boy, and went swimming all by myself.  I loved swooshing my arms and legs around in the water.  I was one happy boy!

Today was "SNOW" much FUN

Alright everyone, can you keep a secret?  Don't tell my grandmas, okay?  They would get pretty mad at mommy and daddy if they knew that I went SLEDDING today!!  It was my first time ever and I think I loved it so much that we better go tomorrow.

Lately, my brain has been telling my body to move and wiggle A LOT.  This is called CHOREA and I don't like it at all.  In fact, when my body starts wiggling so much, I cannot focus very well and get really stressed.  Well, guess what the cure is?  SLEDDING.  Yup, you guessed it folks.  Mommy and Daddy have been really good at distracting me lately from all of my wiggles.  They toss me up in the air, swing me to and fro, and bounce me up and down on a big exercise ball.

 Since Omaha has received so much snow, M & D just knew that I would be up for some more adventure today.  So when my wiggles started, Daddy bundled me up in my snowsuit and away we went!  We climbed the largest mountain I have ever seen.  Once we got to the top, you could see for miles!  Daddy cuddled me into his chest as we got prepared to go down the hill on our sled.  He was laughing and it made me so happy.  Before you know it, we were flying so fast down the hill that not even Kusaba (my doggie) could catch up with us.  Snow was spraying up into the air and the breeze was so cold, but it felt so good.  Daddy could tell that I wanted to go again so away we went!  This time, Mommy came on our sled.  She was a nervous wreck, but I told her to not be such a sissy pants.  We had such a fun time zooming down that hill.  I think my ear's are still ringing from Mommy screaming so much.

On the mend... Kind of

Hey guys, after 2 months of being sick I am finally starting to feel a little bit better.  I have some other issues going on right now, but at least I'm over the RSV, Flu, Bronchiolitis, ear infection, hand/foot/mouth, breakthrough chicken pox, and C-diff! (Wow... that was alot to type for a little guy).  I have been off of oxygen for a few weeks now and made improvements as far as respiratory issues go, but I've been fighting a little disease called Riga-Fede lately.  One of the things that I have always done (because of my brain problems) is stick out my tongue.  I can't help it, it has a mind of its own!!!  This was never a problem until I started to get my teeth in.  Since I never eat with my mouth my teeth are just as sharp as the day they came in.  You can probably see where I'm going with this...  The Dentist told us that with a case as bad and unique as mine, the only option is to remove my 4 lower teeth.  Daddy and mommy talked with the Dr. for a long time to try and come up with a different idea, but the Doc didn't like any of their ideas.  So unless something changes, I have to get my teeth pulled out on Feb. 26th.  I have to go under sleepy medicine again to have it done.  I don't think its going to be a big deal, but mommy and daddy are pretty worried about it.

Anyway, on a much more exciting note I have some pictures of my travels.  Luckily I've been getting around even when I have been sick.

Phaedra Musselman took me on some really really special adventures.  Here are her words about our travels. "I can't really tell where I went, but let's just say that I went to an area with a ton of sand/dust, filled with landmines, flying this lovely helicopter shown behind me picking up people and soldiers who needed help."  Thanks soooo much Phaedra, I'm am honored that I could accompany you in such an incredible cause.  

I found some pictures on Facebook that I didn't realize were there.  Sorry to my friends that took me with you and I didn't post on the blog.  Hopefully I can get all of the pictures up here. 

Some of my mommy and daddies favorites...Sydne & Daryl Jacques at the "Great Pyramid" in Cancun Mexico

DJ Card and Hearing For Life (in Logan Utah) entered a softball tournament in Jett Jersey's.
Too bad the tourney got canceled,  I was ready for my first "W"!

The Lloyds's- I can' even tell you how much they have done with me.  They have taken me all over the world… literally.  Becky (the cute redhead below) often travels for her work.  She has many Jett shirts for different occasions.  If you browse through my blog you will see how many amazing places I have already been with them.  Here are a few that slipped through the cracks.

Becky took me to the Redhead days in Breda, Netherlands

This was a worldwide event… Holy cow, look how many Red heads are there!!!

Becky took me to Sydney

The entire Lloyd family took me with them to Alaska