Sunday, November 10, 2013

Where do I start


Wow, I had such a fun summer.  I never visited the hospital once (I need to learn how to knock on wood) and have felt really good all summer.  Now that its starting to get cold here in Omaha I'm a little worried that I may get sick, but hopefully I won't ever get as sick as I did last winter.  A year ago from now, I could have never imagined that life could be so fun.  I'm so happy that I am able to grow with all my friends (you guys) so you can see how awesome my life is!
I was soooo busy the last few months that I never even got a chance to come on here and tell all you guys about it.  I actually got to travel a little bit myself… turns out its really fun!!!  I went on 2 REALLY long car rides and tried to behave so M & D would want to take me on more.  Since I don't even know where to start, I'll just jump right in.

Lake of the Ozarks-
My very first road trip.  It was about a 5 hour drive from home, but luckily I had my new comfortable car seat and was happy for most of the drive.  I went down there with some of M & D friends so we could ride on a boat and watch people get towed behind it.  Some people are crazy!  Why would you want to get towed behind a moving vehicle???  I was perfectly happy just sitting in the boat watching, but then I got a to go swimming and that was AWESOME, I loved it.
We stayed in a house right on the lake, it was sooo cool.  I want to live by a lake someday because I really like to stick my toes in the water, and hopefully I can skip rocks on the water like daddy someday.


I love being on a boat

We all got to relax and sleep a lot































My new toy-
Daddy built me a really cool new toy.  He built me a color changing LED light board that can flip down over my crib.  I love looking at lights, it helps me relax so I really LOVE this.

Hanging out with family-
I was so lucky to see so many of my grandmas, grandpas, and cousins this summer.  I never get to see my cousins, so it was really fun to play with all of them.  First, almost my entire daddy's side of the family came to Omaha for a family vacation.  I got to hang out with my cousins and aunts/uncles for an entire week.  We did so many fun things, I wish they could come back and play again.  Some of the fun things were:
- All of us kids had to complete 12 challenges together, each challenge completed we earned a golden ticket.  Once we had 12 golden tickets we all got a cool prize.  
-boating at Fremont Lake - again, crazy people that like to get towed behind a moving vehicle… I don't understand this!
-Strategic Air command museum-I love airplanes and since they canceled the air show this year this was a good substitute
- Hanging out with so many people that love and adore me was my favorite part





I'm not sure what they mean, but all the adults thought they were funny
Here are me and cousin Eddie… get it, Cousin Eddie? (Griswold- family vacation)

These shirts were the cool prizes that we earned with our golden tickets


I even earned my very own golden ticket
Next Mommies parents came to town to hang out.  I always get spoiled when they come.  




New car and carseat-
I don't think I told you about my new car/carseat that allows me to ride in the car for longer than 30 minutes.  Well I got a big boy car seat that lets me look outside of the car.  It is so much better.  I can sit semi comfortably for long periods of time.  To accommodate my new carseat and new wheelchair we had to sell the toaster car and get something bigger.  We got a nice shiny new big car that can fit all of my equipment, it is awesome.

-Weird Al concert
Daddy made sure, that given the opportunity, I wouldn't miss a Weird Al concert.  I was feeling up to it and ready for an adventure, so I joined him and his friend Kevin for a guys night out with Weird Al.  The concert was pretty cool.  Crazy lights and loud noises everywhere!  Daddy said it was normal, but there were people dressed up like space men (star wars) green aliens (yoda) Amish people, and other crazy costumes.  Daddy and Kevin said that it was more like a dungeons and dragons conference then a concert, but maybe thats why it is so entertaining to them.  Anyway, I could only handle the awesomeness for a few songs before mommy had to come pick me up.  Luckily, Daddy still let me "Meet" Weird Al by getting him to sign a Jett Powered shirt.  


Did you know that accordion used to belong to daddy?
Seriously, he sold it to Weird al!!!



Jett Powered Dance Workshop in Utah-  Shortly after Mommy and Daddy launched the Jett Powered Foundation, one of Mommy's friends contacted her about raising money for it.  Randi Carter, who Mommy used to dance with in college, wanted to set up a dance workshop in Utah.  She worked very hard putting together the schedule, recruiting professional instructors, and advertising for the event.  Mommy really wishes she could have gone to the event, but alas, she had to stay here in Omaha with me. We hear it went really well, however. The kids wore bright blue Jett t-shirts as they learned and performed various dances.  Randi was so nice to put this together and made sure to tell everyone about me!  Besides learning how to become better dancers, the kids learned to be grateful for their healthy bodies and learned that some kids, like me, aren't born with healthy bodies.  They worked hard and danced for ME that day and I could feel it.  Mommy says I smiled the whole day the workshop was going on.  Thanks so much Randi!  She successfully raised $600 for the Jett Powered Foundation.

Randi is in the middle with her two sons and is surrounded by a few of the participants and instructors
-Chicago
Since I did so awesome driving to the Ozarks earlier in the summer M & D decided they would try and take me to Chicago over Daddies fall break.  My friend Norah, who also has PCH, was going to be at her grandparents house in Chicago that week so we all wanted to go meet her and her family.  Also, M & D 's friends Jason, Becky and Harvey came out and met us there to hang out.  It was such a fun couple days.  We did so many AWESOME things.  We drove around chicago in a boat and saw all the cool HUGE buildings, we ate pizza and hot dogs, went to an old baseball field, went up a really really tall building (sears tower) and saw the entire city (my feeding tube came out and leaked all over when we were in the "skybridge", so I left a nice mess of my "food" all over the glass floor… Whoops!!!) And then I finally got to meet my lifelong buddy Norah.  She is a few months older than me, but I've always liked older women anyway, so it was no big deal.  She was cuter than I ever expected (actually M & D say we kind of look alike).  It was so fun to see someone else like me.  We laid on the floor together, played with stuff animals, she taught me how to knock down a tower of blocks,  Norah showed me her feeding tube and I shower her mine it was awesome!
This is us with Norah and her Mommy Liz

 

This is where my food tube leaked everywhere
 





Halloween-
I had a lot of fun getting dressed up for halloween.  This year I went dressed up as a garden gnome.  For halloween I went and watched daddy play flag football.  It was such an awesome night out I was happy to spend it outside.  Then later, my cool nurse Joan came to take care of me.  At first I thought a giant cat was taking care of me but then I heard her voice and knew who it was.
Joan "kitty" the nurse


I visited dad at school for the annual halloween parade.  He didn't even recognize me with my beard and eyelashes!



-Places I traveled

As always I get to travel the world with all of my great friends.  I'm slowly making progress around the world.  I think I've currently see over 15% of the entire world.  Thanks to everyone for showing me all the amazing places around the world.  Here is where I've been recently!

I got to play baseball with one of daddies friends from school

I ran the iditarod with April Gordon in Alaska


Tony Cat took me to Munich Germany.  I thought castles like that only existed
in Disney movies 
I got to go all over the South with my Grandma & Grandpa Boseman.
Here we are in Warner Robbins GA picking Cotton
We also went to South Carolina, and New Orleans
Bill took me on Vacation to moscow Russia.  Here I am at Bolshoi Theatre
which is across the street from Red Square

Here are Bill and I at the Cathedral of Christ the Savior in Moscow Russia 

I'm only 9 states short of traveling to every state in the US.  So if your going to any of the following states I'd love to go with you (I'd love to go anywhere, but would love to check these off my list)
-Delaware
-Oklahoma
-Kentucky
-New Hampshire
-Virgina
-West Virgina
-Massachusetts
-Mississippi
-Rhode Island

Tuesday, July 16, 2013

Big News!!!

Hey Guys, remember a couple of months ago when I told you that I had some really exciting news... but couldn't tell you about it yet?  Well guess what, I can tell you now!

Go to www.jettpowered.com

 

Everyone that I know has been sooooo AMAZING to me.  You all have offered time, help, money, or just the thought of taking me with you on vacation.  Not all my PCH friends have such a great support system and I want to make sure they have all the best opportunities to grow and learn.  All the proceeds from this foundation are going to help support my friends and fellow angel babies that need a little help.

People all tell me I'm pretty strong.  They tell me that I've fought every day of my life.  They tell me that when they are doing hard things, they think of what I have fought through and it helps them to accomplish the task at hand. You guys are nice to say these kinds of things. I still think I'm just a regular boy. M & D thought it would be appropriate to have this foundation raise money through sporting events, so when the going gets tough you can be "Jett Powered" (I really like the sound of that) and make it to the end. 

We are lucky enough to even have our first event planned.  The awesome people over at FitFarm (the gym M & D go to) have organized a competition in our name.  It is scheduled for Saturday July 20th.
Along with everything else, we have a new logo and some new shirts.  You can check all that out over at www.jettpowered.com.  As you can tell we are all pretty excited about this.  So if you're bored this saturday I'd love to see you at FitFarm

 
Daddy has been helping me train for the competition the last couple weeks!



On another note:  Daddy finally took his dental boards and he has a couple weeks off... I love having him all to myself again

Oh, did I mention that I love summertime too!

Sunday, June 23, 2013

Just so you know...I'm a BIG BOY now.

Okay, so maybe I'm not a big boy when it comes to size (I'm still working on it), but I have turned into such a BIG BOY recently in other ways and you will see why.

For starters, I eat REAL food through my tummy button (G-Tube) now! My mommy and daddy felt like the formula that I was on wasn't cooperating with my tummy...and I agree.  It made me feel yucky ALL the time.  In fact, the yucky stuff couldn't even stay in my belly.  I was throwing up a lot.  Mommy and Daddy were worried about me.  One day, mommy started researching what would help me feel better.  She discovered that a blended diet was the way to go for me.  The formula that I was on was full of sugar...take a look for yourself.  The second and third ingredients are SUGAR!



Now, my mommy blends up real food in our Vitamix.  She puts in nutritious and filling ingredients like: coconut milk, ground flaxseed, banana, sweet potato, green beans, eggs (cooked), rice cereal, and avocado oil.  She blends it up real fast so that everything mixes together smoothly.  After that, it goes straight into my belly through my feeding tube!  How cool is that?

What's even better is that I am feeling A LOT better.  I don't vomit as much, I can go potty a lot easier, and I am a happier boy.  The doctors are still a little skeptical that mommy and daddy changed my diet so drastically and so they have a nurse come to my house every week to check my electrolyte levels. When she comes, she pokes me in the finger with a sharp needle (ouch!) and then checks my blood to make sure that I am still a healthy, growing boy.  So far, all of my needle pokes have come out great.  Yay for mommy and daddy! They know what's up.

As for the next BIG change in my life...I have a new set of wheels!  Now I can go real fast.  This is my first wheelchair and it will last me a long time (up until I am 54" long!).  Doesn't it look all shiny and new? I didn't really like it at first because I would rather have mommy or daddy hold me, but I got the hang of it, especially when we get to go outside for walks.  That is the most fun part!  Daddy said he is going to install some tower speakers and some afterburners.  I will definitely be the coolest kid on the block.

Speaking of coolest kid on the block, I have some really great friends.  They are always so nice to include me and shower me with stuffed animals. Below is my mommy's piano student, Crew.  He and his brothers are so fun to be around.


I also like to ride my neighborhood with these fun kids.  Maylee, my next door neighbor, held me tight so that I was safe.  I guess no one else got the memo that they weren't supposed to wear pants…just me!


And guess what, you guys?  I have also fit in some time to travel with some of mommy and daddy's favorite people!  Here is where I've been the last couple of months.

Cancun, Mexico with Cody and Chelsea Winterholler.  



Puerto Rico with the Winterhollers.  They were traveling fools this month!  We had so much fun soaking in the beautiful scenery and shopping in the city.







April Gordon, mommy and daddy's friend from Utah, took me to Europe, to a few places that I had never been!  We visited the sites of where "The Sound of Music" was filmed and explored the beautiful architecture in Prague. She is such a fun traveling buddy because she loves to laugh and do adventurous things.





Last, but not least, I got to go to Tribalfest in California with one of my bestest nurses ever!  Joan (on the far left) is a fabulous belly dancer and looked beautiful in all of her costumes.  She even taught me how to shake my belly!



As you can see, I am one BIG and one HAPPY boy lately!
Have a good week everyone.  I love you all and thank you for always thinking of me when you go on your adventures!