Friday, December 28, 2012

Christmas travels around the world

I've been getting so behind.  With all of the fun that has been going on I haven't updated my travels lately. For my latest travels; Mommy and Daddy were brave enough to take me away from home.  We are in Utah right now visiting all of my relatives.  Its really good to see everyone, but I'm not sure I like being away from home very much.  I'm kind of used to my crib, my house, my rules, and having M&D to myself and its kind of weird being away from all of that.

We have only been here a couple of days, yet I have already had a couple of scares.  The scariest was when my feeding tube accidentally got pulled out.  My feeding tube goes through a hole in my stomach then all the way to my intestines.  It is supposed to be a semi-permanent thing because I have to take sleepy medicine and have surgery to get it replaced.  I don't know how it got pulled out because there is a little balloon that is supposed to hold it in my tummy.  I guess the balloon must have gotten ripped out of my tummy, because it hurt really really bad... then my tummy started bleeding pretty bad.

Somehow M&D figured out a way to get my tube back in and I was good to go.  Right now, M & D are watching me closely.  They are making sure that I don't get sick from my feeds or that blood doesn't come out of my tummy.

I am so happy that I didn't have to go to the hospital.  My M & D might be rookie doctors, but they fixed me!  I am back to my normal self and ready for some more travel!!

 First off, did you know that I got to visit Santa in the North Pole?  Well I did...AND I got to help out in the elf workshop.  If you don't believe me, look at the pictures below!  A lot of my friends and family put this Christmas tree together for the Utah Festival of Trees.  Isn't it beautiful!?  I am happy to report that this tree sold for a lot of money.  The money will go toward helping other kids like me at Primary Children's Hospital. 

Thanks for all of the FUN adventures!!

Saturday, December 22, 2012

Heaven is in need of some strong spirits right now!

I wish I wasn't posting this right now.  I lost my friend Rudy just last week, and this is way to soon to lose another angel baby friend.  My friend Isabel retrieved her Angel wings earlier this week.  She was only a couple months older than me.  She joined the group of angel babies that comes to hang out with me every night.  I wonder what is going on up in heaven, that they need so many strong soldiers to return back right now.  I know my friends are the best of the best, and whatever they are needed for up in heaven is more important than their mission here.

Isabel, although I'm excited for your nightly visits, I'm sad that you had to leave your family and other loved ones so early.  I know you, Rudy, Maia and all the other PCH superstars are rocking it up in heaven.  Save me a pair of angel wings so I can rock it with you guys when I see you next.


Friday, December 7, 2012

Another Angel gets his wings

This past week one of my angel baby friends was able to get his wings.  His job here is finally done and he is now able to explore the full potential of what his frail body couldn't do here on earth.  Rudy also has PCH, just like me.  He is about 9 months older than me, and just as handsome.  He has an awesome family that loved him just as much as my mommy and daddy do.  Luckily Rudy left with a smile on his face as his mom was holding him.  I know he is now running, jumping, laughing and having a good time, and I am so happy for him.  We will miss you buddy!

Rudy, I never personally met you before your time, but now I get to play with you whenever I'm asleep and all my other angels come to play.  Even though you live really far away and I didn't meet you in person, I feel like I know you.  Remember, you sent me those awesome British lights.  They are sooo cool, and I still play with them almost every day.  Your mommy and daddy have inspired my M&D and helped motivate them when I was really hard to take care of.  We are praying for your family.  I'm so glad that we can be buddies for ever.  Save me a pair of angel wings so we can hang out whenever I see you next.

Tuesday, December 4, 2012

Birthdays are awesome

Hey everyone guess what???  I turned 1 year old this last weekend.  This was kind of a big deal because no one really knew if I would make it to this point or not. (duh… I knew it wouldn't be a problem, I wish they would listen to me)  I had the COOLEST party ever with all my friends out in Omaha.  On top of that I got to share my birthday with friends across the entire country.  Here in Omaha we lit off over 150 chinese prayer lanterns (they are the cool sky lights that you see in my favorite movie Tangled) and a lot of prayers were said for all my other angel baby friends. Another 150 lanterns were lit off from California to New York.  Mom says that all of our prayers that were said while lanterns were being lit will be felt by people all over during this Christmas season.  The lanterns were soooo cool, these pictures don't do them justice.  As far as you could see, there were lanterns floating around.  I LOVE to look at lights, so I really loved this.  One of the coolest things though, is that if you drove 1 mile away from where we live, it was so foggy you couldn't see more than a few hundred feet.  My angels knew that this was important, and made it clear just around my house.  Thanks!

After that, a lot of people came over and ate donuts and drank hot chocolate with me.  I got to meet sooooo many awesome people as well as hang out with some friends I haven't seen in a while (like both grandparents that came out for the party).  And guess what, I ate real food for the first time ever.  Daddy let me lick this really yummy black stuff off of a donut, and I loved it.  Then he rubbed in all over my face and I got to try and lick it off.
I had so much fun getting all the attention.  Everyone wanted to hold me and say hi.  I don't think I have ever been that happy.  It was so much fun, I didn't even feel any pain or have any problems during the entire party.  I am going to post a few pictures, but I'm trying to round up some more, so stay tuned and I'll post more.
Also, I have been traveling around the last month and will tell you all about my recent travels soon.

Mommy and Daddy decided to light off these lanterns to help all of my angel friends, and others in need.  The lanterns are called "chinese wishing lanterns" and you are supposed to say a prayer or make a wish as you light them off.  So many people have prayed for me over the last year that they decided there would be no better way to kick off the chrismas season by directing our prayers towards those in need.

If anyone else has pictures of lighting your lanterns we would love to see them.  Please send them to me at

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.

Monday, October 29, 2012

My October TRAVELS

I traveled to a lot of fun places this month and got to participate in some amazing outdoor adventures.  

Thank you to all of my friends who took me with you.  Enjoy the slide show!!

Below are some pictures that my mommy took of me this month.  I'm getting bigger!

Wednesday, October 17, 2012

A Couple Thank You Notes


Thank you for making it possible for me to participate in your races this year!  Inside this little body of mine is a boy who wants to run really fast.  Although I may not be able to walk or run during this lifetime, I am grateful for people like you who take the time to make sure that I am part of such events.

Friends, neighbors, and strangers who see my story and do something to help out continually strengthen my mommy and daddy.  We are so incredibly grateful and humbled by the good people in this world! 

Thank you from the bottom of my big heart!!

Dear Jason and Becky,

THANK YOU for taking me with you all over the world!  Here’s a picture of me cuddling the koala you sent…I tried to get a picture of the Belgian chocolates, but my mom already ate them all.

You two are the BEST (adopted) aunt and uncle anyone could ask for.  My mommy and daddy really think the world of you both.  We can’t wait to see you at Christmas!


Saturday, October 6, 2012

Extreme Sports

You probably could guess this, but did you know that I'm into extreme sports?  Besides running marathons and riding bikes (with all of you!), my mommy and I have done some stuff on our own this week.

We visited Vala's Pumpkin Patch in Gretna, NE.  It is the Disneyland of all pumpkin patches! It was amazing...everything from humongous jumping pillows to go-carts to the yummiest kettle corn on the planet.

I felt the sun and wind on my face as my mommy and I drove the go-carts and jumped on the trampolines.  The only time I cried was when my mommy made me play in a "sand" box filled with corn kernels.  No way, mom...that kind of stuff is for babies!  

I hope you enjoy my adventures, because I sure did.

I'll have a lot more updates coming in the next few days.  You all have taken me to some pretty amazing places.  Have a nice day everyone!  Always remember to "feel the wind in your hair" and to look for the good in everything.

Love, Jett

Okay, so maybe I can't literally "feel the wind in my hair", but you know what I mean!
I'm still working on growing some hair people.

Sunday, September 30, 2012

Jett POWER!!

There is a special group of people that I want to tell you about.  The Highmark Group out of Draper, UT is a landscaping contracting company who heard my story and decided to help me and my family!  Every year, the employees and management all participate in an "Annual Ride (your bike) to Work" day.  They pick a special person to sponsor for this event.  And guess what??

They chose ME!!

Even though my parents and I now live in Omaha, Nebraska…they still decided that I was going to be their special buddy.  Weeks in advance, employees gathered donations.  They even made bike jerseys with my logo on them.  Underneath the logo read, "JETT POWER!"  I bet this helped them ride really fast.

My mommy and daddy weren't able to attend because we live so far away.  And let's be honest, I may not be the easiest baby to travel with!  M & D were really sad that they couldn't take me to this big event.  However, Aunt Amy (daddy's sister) and Aunt Tiffany (mommy's sister) were able to go.  They got to tell everyone my story and tell all of the employees how grateful our family is for their support.  Mommy and I were able to "kind of" be there on Skype.  It was so amazing to see so many people (many of which, we have never had the privilege of meeting) wearing my shirt and showing me their Jett Power!

All in all, the employees of the Highmark Group rode 283 miles and raised $1200 for me. Wow!

THANK YOU THANK YOU THANK YOU! Our family is strengthened every day by those who have participated in events like this.  YOU are the ones who give us JETT POWER!!

Sunday, September 23, 2012

10% of the world

With the help of all my wonderful friends I have officially traveled 10% of the world.  What an amazing feat to have accomplished so quickly.  It feels like I have traveled much more than 10%, but I guess the world has a lot of places to see.  Thanks again to all of my friends that have made this happen.

Tuesday, September 11, 2012

The ZOO, an EEG, and lots of fun travels!

Hi Everyone!
        I hope you are all having a good week…my momma has not been good about getting this blog post up as fast as I would like.  I have TRIED and TRIED to tell her.  Finally, she got around to it today and I am excited to tell you about my past week.

Last Tuesday, a nice lady from Neuroquest came to my house and put these crazy colored strings all over my head.  I was not too happy about it.  She had to super glue 24 of them to my head.  My mommy told me that the doctors are trying to figure my brain out…they want to know FOR SURE if I have seizures or not.  Sometimes I do some crazy stuff like twitch or roll my eyes back.  I like to keep everyone on their toes.  The EEG lasted for 48 hours and I had to stay in front of a video camera the WHOLE time.  Man, was that rough!  I couldn't go outside or anything (but my mom may have snuck me outside a couple times).

My mommy and daddy will find out the results from this EEG in a couple of weeks.  They are, at least, hoping that the brain doctors will be able to prescribe some medicine that will help me be more comfortable.  I would LOVE that and I hope the doctors are able to do it!

Once the EEG was complete, it took my mommy two hours to get these strings off of my head!  I was a very good boy and only cried a little bit and, man, was I HAPPY to have them off.  We went straight outside so I could feel the wind run through my hair again.  I closed my eyes and enjoyed every second of it!

Just a few days ago, my mommy and daddy took me to the Omaha Zoo.  I loved being outside in the beautiful, sunny weather.  We even went to the petting zoo…and I touched a goat!  Before we knew it, however, that crazy goat was trying to eat my feeding tube.  Don't worry, I laid down the smack, and gave that goat a kick with my strong legs!

And lastly, my TRAVELS!  I have made so many wonderful friends.  I think I may be the most popular baby ever…and the luckiest.  You, my friends, are wonderful people.  You keep me and my parents going!  We have become so strong because of your faith in us.  Enjoy the following video of my September travels.

Saturday, September 8, 2012

Growing Up!!!

Hey Guys,

I'm just finishing up my latest travel slide show and it will hopefully be up this weekend, but in the mean time I just wanted to show everyone how Big I am getting... I mean seriously, look how long I am.  I may be really skinny, but I make up for it in length.   I'm so big that I have grown out of the little device that mommy puts me in and walks around with, I think its called a baby bjorn.  I'm going prove a lot of people wrong and be the first PCH basketball player...

I've been doing pretty good lately.  Mommy has been brave with trying to take me out during the day.  I don't really like my new lay flat car seat because it is too small, but we both deal with it and we're able to get out every few days. 

Oh, Guess what???  M&D took me to an airshow and on a boat over the last couple weeks... and I LOVED IT!!!  M&D usually take me to the nurse when they want to go somewhere fun (that always makes me feel bad) but last week they decided to start taking me along.  It was soooo cool to see the airplanes.  I always hear daddy talk about how cool they are, and I see them all over my room, but I had no idea that they were so awesome in real life.  They went really fast, made loud noises, went upside down, and looked really cool.  Then our friends invited us to go wakeboarding.  M&D were really nervous to take me on a boat, but after I had so much fun at the airshow they decided to try it out.  Well... It was also awesome.  The boat vibrated just right that it made my tummy feel really relaxed.  Then the wind was blowing ever so slightly, so I got really sleepy eyes and took a nap.  It was so nice to soak up some rays (thats what you say when you're in the sun right?) with mommy, daddy and their friends.  (Thanks Kim Bowman)

Lastly, I want to just give you a really quick hint at something that happened yesterday.  I'll tell you more about it when I get the pictures, but I'm so excited I have to say something.  The Highmark Group, a landscaping business back home in Utah, held their annual work party.  They are a VERY nice company that does a lot of good things.  One of them is going to India to help build homes as a service.  A couple months ago I showed you a picture of their WHOLE team that took me to India with them. Anyway, Aaron, the CEO of this amazing company believes that their company parties should benefit a good cause.  There will be many more details to come, but yesterday they all rode their bikes to work with Me on their hearts.  Although I think I'm perfectly normal, I know Mommy and Daddy were in tears about this all day yesterday, so I'm pretty sure the thoughtfulness struck a chord in them.

Stay tuned for some more pictures in the next few days.