Thursday, May 31, 2012

4 weeks after surgery and my new life in Omaha

Wow, can you believe that this is what I looked like 4 weeks ago.

It has been 4 weeks since my lip surgery/nose job.  M & D really miss my little cleft, they say it was cute and endearing… whatever that means.  As for me, I'm pretty glad that it is gone.  The down side is that I have to wear a little rubber tube that sticks in my nose, and I HATE it.  I guess it is to keep my nostril from collapsing, but it really hurts to have in.  My lip and nose are healing pretty good; Dr Morales did a really good job.  I still have some stitches in my mouth that I really like to play with, with my tongue; but those should be gone soon.  It took me a couple weeks to start feeling good again after the surgery, but I think I am starting to finally feel alright.  I've had some really fun days lately with M & D (I'll tell you about those in a bit) Here I am, you can barely see my scar

We moved to Omaha last week to join daddy (you can see my last post to hear about the amazing friends that helped us get here)  I have now been here 1 week and I couldn't love it more!!!  Here are the highlights so far:
-We are surrounded by amazing people that always want to come hang out with us, help mommy during the day, or play with me.  
-Daddy and I have been on a walk every night since I've been here (night time walks are my very favorite, they help me go to sleep)
-Kusaba is starting to hang out with me more
-I have my very own room
- We're close to friends that are near my age that I can try to play with (we are only 1 minute away from my buddy Braxton, that is a fellow special needs baby.  I'm hoping he can teach me a lot of cool tricks)

We spent this past weekend (memorial day) here in Omaha.  M & D didn't have any plans for memorial day, so I planned a tour of the ER at the local children's hospital.  I couldn't breath very good and I was wheezing and short on breath, so we all went to the hospital to get it checked out.  Turns out I had some pulmonary edema (can lead to pneumonia if not careful).  They told me I was going to have to stay the night, but I didn't like that idea.  I tried to be really good for the doctors for the next little while.  When they saw that I was breathing good again, and my O2 sats were back up, they decided I could go home. After I spent most of the day there we finally got to go home to let daddy get ready for his first day of school.  The next day, after daddy was home from school, I had some really really bad pain in my tummy and I screamed really hard.  After a few minutes, blood started to come out of my feeding tube… so we headed back to the ER to hang out with the friends we made the day before.  (unfortunately our car was not home at the moment, so we had to borrow one of our nice neighbors cars. Thanks Chelsea)  I guess I have stomach ulcers (isn't that an old person problem?) and they had perforated and started to bleed, that is what caused the pain and blood.  After a few more hours at the hospital they decided to send me home with some more stomach drugs.

I was pretty miserable for the few weeks after my surgery before we moved to Omaha, but once we got here and I got to see daddy again, despite the 2 ER visits, I have been feeling much better. Mommy and I have had some bonding time lately… she found my happy button (tickling my face with her hair) and its really to fun play with her.  She is the best mommy ever!!!  Here are some pics of us the last couple of weeks!!!

Luvin up on Momma!

Me and my stuffed Beagle cuddling

Me and my real beagle cuddling

Another one of us on our way to Omaha in the airplane

Friday, May 25, 2012

My first Jett ride!!!

Me, Mommy, and G-ma & G-pa Watts all made it to Omaha.  We finally came out to meet daddy here, and start our new life.  Daddy has been out here for the last 2 weeks working really hard to fix up our townhouse before I came.  The house looks great and I'm soooo excited to see him.  We flew in yesterday on a really really cool Citation Encore.   Mommy has an amazing family friend that was able to help get me here.  You see, any sickness that I get could possibly kill me so I can't ride on a big commercial airplane; and I can't sit in my carseat, so a 14 hour drive is also not an option.  Mommy had no idea how she and I were going to move to Omaha.  This amazing friend put us on a private airplane and sent it to Omaha.  I can't ever thank them enough.  They are truly angels on this earth!!

I'm missing my baby aviator glasses, otherwise complete and
ready to go!

G-ma and G-pa Watts coming to Omaha to help
I had to preflight the cockpit

Here we go

Sooooooo comfortable

I'm Daddy's little co-pilot… See my shirt even says so!
You can't tell from the picture, but I felt better during this flight than I have the last 2 weeks.
I guess I was just born to fly!!!

Tuesday, May 22, 2012

My first concert!!!

Yesterday I got to go to my very first concert.  Jimmy Kimmel hosts a mini concert series in the summer, and Gavin Degraw was performing at it.  I got to go with 2 beautiful ladies, Laura Lambson and Mollie Salazar.

They also gave Gavin and Jimmy some of my t-shirts, which I thought was super awesome.  Word is that the stage manager personally gave the shirts to Gavin and he saw them and thought the were pretty cool.

Thanks sooooooo much for taking me with you Laura and Mollie.  I've now been to a concert and hung out with 2 awesome chikas… who would have ever thought!!!

Monday, May 21, 2012

This weekend...

I got to cuddle with my beautiful Aunt Tiffany.  She sounds just like my mommy.  I love when she sings me songs and tickles my head...some people call her the "Baby Whisperer" because she can calm me down when I get too wiggly.  She is the best!

Sunday, May 20, 2012

Maia's gone home

One of my angel baby friends, Maia, passed away this morning.  This came after a long battle with breathing problems and a scary stay at the hospital.  Luckily Maia was released from the hospital yesterday and was able to return to her eternal home peacefully from the comfort of her earthly home.  Maia was only 1 month older than me.  Her parents were lucky enough to play with her for 7 months before her job here was complete.  I know she is comfortable now, and I'm sure she will be watching out for me and all the other angel babies.  I hope that her mommy and the rest of her family can be at peace knowing that Maia has returned to heaven and is truly happy.

Maia, I know you returned to heaven for the angel baby reunion far sooner than anyone wanted.  Your life is an inspiration for me and my parents.  Good luck to your family, and save me a seat!

Thursday, May 17, 2012

Jett's at Cabela's

Daddy stopped at the original Cabela's in Sidney Ne, to model my shirt with all the animals.  Thanks daddy.  I hope to go hunting some day and see them all myself. 

Saturday, May 12, 2012

New places New faces

As most of you know Amy and Jeremy (my aunt and uncle) gave m & d & me a really cool present.  They made some t shirts with a logo of me on it and gave it to us.  They also made some for other people too.  We have all worn them now and they are AWESOME, I love my shirt.  The coolest thing that happened because of the shirts, is friends and strangers have told us that I have inspired them.  I don't try to inspire anyone, but I guess the fact that I have constant help from my angel friends makes it easy for me.   I'm so excited to travel around the world.  Where do you think I will go first.  Whoever can guess correctly will win a night hanging out with me… Just kidding.  But I am really excited. Thank you A & J, I love you guys so much, and I will try not to poop in my "me" shirt.

Since the last time I wrote in here, my daddy left to go to Omaha for school.  I'm not sure what that means, but I don't like it.  He isn't here anymore.  I miss my nightly walks around the block while he tells me stories about Strawberry Jones and his horse Shooter.  I miss him playing the guitar to me.  I miss doing my 20 tummy rolls everyday.  Mommy keeps telling me that we will see him again soon, but I don't think it will be soon enough.  I want my daddy back!!! 

Mommy and me moved up to Logan today for a little while, until we go to Omaha to see daddy I think.  Its fun to be in a different house now.  I was kind of getting sick of the same old scenery in SLC.  Up here there are all sorts of new friends that I get to meet, and new cousins that I don't ever remember meeting before.  I'm excited for this new adventure.

My tummy and lip are starting to heal pretty well.  Mommy took the big metal ring off my face because it was looking so good.  I'm so glad to get rid of that.  My tummy still hurts whenever there is food in it, but hopefully that stops soon. 

Thursday, May 10, 2012

My JETT Logo is super cool!

Take JETT around the world with you!

  this post is being written by AMY RIGBY
(Cody's smartest and best looking sister!)  

 Help Jett travel the world and do as many amazing things as he can in his limited lifetime. If he can't do it himself, he can do it "on your heart". Email pictures of you or your family wearing the t-shirt to Jett at , and they will be able to add those places
 to Jett's "Flight Plan"!
 (you can also tag Jett Boseman on facebook)

We are selling shirts for $20/shirt. 

All proceeds are being put in a special bank account at WELLS FARGO for Jett's care.  We have already had an overwhelming response to this.  So, because Cody and Tennille would never sell Jett t-shirts, but because you are the people who would want one, I've gotten on their blog to tell you how you can get one! 

Glenn Beck's totally awesome E-commerce team is now helping us out with the orders because they have gotten overwhelming for us to fill.  Follow this link to purchase them, now "made in America"... just like Jett!  

Thanks for your love and support to the most courageous little boy I have ever met...........  Amy

Here's the story about the shirt......................

Last night we went to dinner with Cody and Tennille, Mom and Dad at Bombay House.

The occasion was to say GOODBYE to CODY and TENNILLE.

Cody is loading his moving truck today and leaving for OMAHA, Nebraska to complete the last three years of dental school. Tennille and Jett will follow in a few weeks when the condo is ready for them....

SOOOO we surprised CODY AND TENNILLE with something special!


Jeremy (my husband) thought it would be a good idea for Jett to have a logo and a tshirt we could all wear to rally around him, for him, with him, and of course his parents. Our initial hope was to print a few t-shirts for our immediate family and send them on their way.

HOWEVER... I mentioned my idea to a few friends and they wanted t-shirts... I mentioned it to my parents and they texted a few people and they all wanted t-shirts. You see where this is going... We ordered an initial 85 shirts so that we could give them to Cody and Tennille before they left, and we are taking orders for more, for anyone who wants one or a few.

We were able to get the graphic design donated (a huge thank you Sean Bates). And the t-shirts printed for cost (a big thanks to Brett Lloyd and his family).

Wednesday, May 9, 2012

Awesome friend

Last night I finally had the honor to meet Lila. Lila and I know each other from heaven, before we came to mommy and daddy. She also gets to play with her angel friends when she sleeps, just like me. She has a condition called vici syndrome. (that's a much better name than my big long syndromes name) which means she will also be going back to heaven before anyone would like. we have a lot of similarities between the two of us so it was really good to meet her. She is so well behaved and incredibly cute, so I'm kind of embarrassed that I was mad all of last night, I hope I didn't scare her off with my crying. Lila's mommy and daddy are amazing, and I think they really inspire my m&d, so thanks Quinn and kristi. If you want to read about Lila and her inspiring story go here. or click on her link on the side bar.
Things accomplished:
-Held a girls hand for the first time
-Met my friend from heaven, in person
-tried(and loved) my first pizookie... Boo yeah!

Monday, May 7, 2012

Lets Party

We had a party last night to celebrate me making it to 10 pounds.  It was soooo fun!  I got to wear a cool hat around and Mommy even gave me some really tasty thick white stuff called whip cream.  Daddy kept saying that he would give me some of his famous smoked brisket through my feeding tube, but I don't think he did; at least I never tasted it.  I think I'm going to work really hard to gain weight so I can have more of these parties.

I dig this whip cream stuff

Saturday, May 5, 2012

Messing up my mustache

Everyone has been saying I look like a new boy, I guess its because I got the hole in my lip fixed on thursday.  I don't feel like a new boy, all I know is my lip and nose hurt and there is an annoying metal hoop that sits on my face.  Most of all, I noticed that the doctor ruined the mustache I've been working on for 5 months… ugh, no more Mustache May for me!!!  M&D say Dr. Morales did an amazing job on my lip, and I guess he had to have done pretty good, because I felt good enough to leave the hospital after just one night.

After I got home daddy didn't let me have much down time.  I hate that I have to lay in one spot all day, so when M&D put me to work I really like it.  Daddy is getting ready to move in a couple days so he needed help fixing his motorcycle.  His fingers are like big fat binkies, so he needed someone with small fingers to help him.  I fetched a couple screws out of the engine then put them back in with a baby screwdriver. Hopefully daddy will let me start doing some harder things soon, but I'm still learning.  Im sure going to miss daddy when he leaves. Im glad we are only going to be apart for 3 weeks.

-I was really brave and had my 2nd surgery in 2 weeks.  I did so good they let me go home earlier than usual
-I worked on daddy's motorcycle with him
-I got to ride a motorcycle
-I went to my 1st sporting event, a kids lacrosse game, and I really like sports
-I'm trying to make daddy feel bad about leaving next week, and i think its working

Thursday, May 3, 2012

10 pounds and an end of my wide smiles

I've been busy the last couple of days.  Yesterday was a big deal for mommy and daddy.  We went to the brain doctor because my genetic tests for PCH were finally back and he was going to tell us what they found out.  But before the doctors appointment they put me on this really uncomfortable table, then they started high fiveing.  Something about I finally weighed 10 pounds… What do they expect when they pump micro lipids (pure fat) into my body 20 hours a day.  I didn't think it was a big deal at all, but they want to throw me a 10 pound party.  In fact, I'm starting to get some rolls on my knees and elbows; and I don't like it.  I need to get on a new work out plan.  I lost my 8 pack, and now I'm getting some rolls.

After mommy was done jumping up and down we went back to see the really nice brain doctor.  I was kind of sick of being there already so I decided to cry and arch my back until I got too tired to do it anymore and fell asleep.  As I was sleeping I heard the doctor telling mommy and daddy that my genes said that I have PCH (Duh… I already told them that weeks ago, why didn't they just listen to me?)  They were kind of sad after that, but it doesn't change anything for me.

Right now I'm back at the hospital waiting to go back for another surgery.  M & D don't think I know a whole lot, but I recognize this place from last week and I know that I don't like it because it makes me hurt.  I think I am going to get my lip fixed this time.  I don't' know why they are fixing it, I was planning on using that as my "cute" factor when I try to pick up on the ladies.  Nothing like a "wide smile" to make a good first impression.  Its worked on all the girls I've met so far.  Oh well, I guess I'll just have to woo them with my big beautiful eyes.  I'll be sure to show everyone how I look as soon as I'm done getting my lip fixed.  Wish me luck.

Here are my big beautiful eyes that I'm going to woo the ladies with

Alright, I'm ready… Lets do this!!!

Tuesday, May 1, 2012

Hi everybody

Hi, My name is Jett.  Most people don't call me normal, and that is why i'm going to blog about my story, because to me and my parents I am normal.  Part of my lip is missing and there is a big hole in the back of my mouth, I think this is called a cleft lip & palate. I also have a condition called PontoCerebellar Hypoplasia type 2 (I know, its a mouthful) Read more about it here.  It means that parts of my brain never grew when I was in mommies tummy, and people seem to think that I can't do things normal kids can do.  They say I will never be able to walk, talk, sit up, crawl, eat, or many other basic life functions.  I have a really good physical therapist named Mike as well as a lot of other good doctors that are going to help me prove some people wrong.  I'm going to use my blog to keep track of my accomplishments, I think there will be a lot of them.  People always feel bad for me, but the funny thing is, I'm the lucky one.  I have parents that hang out with me all day every day, I get to see my grandparents more than most other kids, when people hold me I can always make them smile, but best of all: whenever I go to sleep I get to hang out with these really cool friends that all have wings… mommy calls them angels.

Mommy and Daddy call me their fighter Jett because they think I'm so strong… and I think they're right.  If they hadn't put this big tube in my tummy I'd show a picture of my 8 pack.  I've already been under sleepy medicine multiple times, once to take pictures of my brain, once to take pictures of my tummy, once to put a tube into my tummy because I can't swallow stuff in my mouth, and once to fix the hole in my lip.  I'm sure I'm going to have more sleepy medicine, but I don't know when.
Daddy is in dental school and has moved away from all of my grandparents and aunts and uncles and cousins for 3 years.  Me and mommy will be joining him in Omaha very soon, so I want to write this blog so everyone back home can follow my perfectly normal story. In addition, I want to tell you about all my friends that also play with angels.  For now I want to introduce you to my celebrity crush Avery.  She is cute, funny, sassy, and she is now among my angel friends. Avery's Blog