Long due update, 1 year anniversary

This is Jetts mom and dad.  Jett has been feeling a little under the weather lately and we wanted to update the blog for him since he hasn't felt up to it.

First off, it was one year ago today that Cody and I found out Jett's diagnosis/prognosis. To say that this year has been a year of tremendous trial and growth would be an understatement. Here is what I have learned...Life is hard. It can be scary and unpredictable. You might feel helpless at times. Yet, life is beautiful. The world is full of amazing, compassionate people. Angels are real. God is real...Trust in Him. Live each day like you mean it. Celebrate the small things. Be kind to those around you...you do not know what they might be struggling with. Have a plan, but be able to roll with the punches. Laughter should happen EVERY SINGLE DAY. Live moment by moment and enjoy the journey, whatever it may bring.

This past month has been really really rough on everyone.  I'll try to sum it up and be as concise as possible.  Against our better judgement, we decided to go back to Utah for the Christmas break.  I say against our better judgement, because driving 14 hours with Jett is not possible and riding on a commercial airline during the flu season is potentially fatal for Jett.  We decided that if we took the proper precautions we would take the risk and fly back to Utah.  

Well it seems that we won't EVER be taking Jett on the airlines again.  Jett came down with C-Diff (clostridium Difficile) the day after Christmas.  This is a really tenacious intestinal bacteria that causes severe diarrhea, vomiting and overall miserable feeling, and it is very hard to get rid of.  Most healthy people that get this bacteria end up losing 5-20% of their body weight over the course of the sickness.  Jett only weighed 12.5 pounds and had 0% body fat, so losing weight was not a very good option for him.  After a couple trips to the hospital, a couple tests, and some lengthy discussions about treatment options we were sent back home to help him recover.  (one of the treatment options is a fecal transplant... yup you read that right.  They take fecal matter from a "donor" and inject it through a feeding tube directly into the stomach.  For some reason, we had a lot of friends that were really willing to donate for Jett.  Haha, I know how to sign up to be an organ donor, but I want to know where I sign up to be a fecal donor)  Doctors thought the correct treatment option at this point would be antibiotics, so thats what we tried.  Over the course of the next week, Jett lost 2.5 pounds and was back down to 10 pounds.  Even though he is fed through a tube and it goes directly to his intestine, he wasn't able to keep anything down.  We went to the hospital a couple times for him to get IV fluids so he could stay hydrated, but that did nothing for calories and nourishment.  This was a really really scary time for us.  If you not taking in any calories your body will start to burn your fat.  Once it has used all the fat it will use proteins.  If this goes on very long, your body will not have the proteins necessary to function and your organs will start to shut down.  Once this happens, it is usually the beginning of the end for kids like Jett.  

Jett was still very sick when we left Salt Lake to come back to Omaha, but we were excited to get back home where we have an amazing pediatrician who knows Jett, our awesome nurses that help us take care of him at night, and friends that support us.  When we left, both sets of Jett's grandparents thought they were saying goodbye to him for the last time.  It was a very emotional goodbye for everyone.  (Neither of us thought this was Jett's time to go, but it was hard to see our parents like that)

When we got back home and into our (and Jett's) comfort zone he immediately started feeling better and improving.  The first night we were home he slept during the night for the first time in 2 weeks.  He started tolerating his feeds the next morning, and stopped puking the same day.  We thought we were on the mend. 

(Side note:  We don't give Jett near enough credit for what he knows and feels.  We didn't think he has "comfort zones" or would know the difference between home or grandma's house, but he clearly does.  He knows mom and dad.  He knows his bed.  He knows his nurses.  And he has an opinion of where he would like to be)

Come to find out, we were not on the mend; it was just the beginning.  We think he caught another bug on the plane ride home because it showed up 3 days after we got home. 

Just as he was starting to make some improvements on the C-diff, we started noticing that he had a fever.  We would give him tylenol and it would come down... at least for the 1st day.  Eventually he was maintaining 104 degrees and tylenol wouldn't help at all... so, Back to the hospital.  After more blood draws and a couple chest x-rays they determined that Jett had RSV AND the Flu.  They let us go home because we have all the necessary equipment there and he would be more comfortable at home.  3 miserable days went by and he kept getting worse.  We noticed that his lungs were sounding different when we would listen to them.  Since pneumonia is a very deadly sickness for PCH kids, we didn't want to mess around at all.  We went back to the hospital for another chest xray.  This time they said it had developed into Brochiolitis!  Thats better than pneumonia, but still no fun. (For those that are keeping track at this point he currently has the following: C-diff, RSV, Influenza, & bronchiolitis.) They wanted to keep him at the hospital this time.  He stayed for 5 days with marginal improvement but at least he wasn't deteriorating either.  They eventually sent us home with some oxygen because there was nothing they could do there that we couldn't do at home.  But before we went home they figured out that on top of everything else he also had a double ear infection too.  (that is 5 things at once!!!!!)

Doing his best superman impression

Hurray!!! I'm home finally

He has been home now for about 10 days.  We were able to bring him off the O2 a couple of days ago and he really like not having that O2 cannule in his nose all the time.  He has been feeling good for the last few days and is starting to get back to normal.  We still haven't seen many smiles lately, but we sure can't blame him.

We always knew that Jett was a fighter, but Wow we never knew how much he could fight.  It must have taken every ounce of energy in his body to keep from aspirating and developing pneumonia as well as just holding on to his life.  I guarantee that it would have been much easier to let go and slip away into the light.  We know that heavenly father has a plan for him and its not yet complete, therefore he has to fight as hard as possible until it is complete.  Raising a special needs kid is harder than I could have ever imagined but knowing things like that helps me make it through.  He inspires me, and as cliche as it sounds, he makes me want to be a better person.  

Sorry for hijacking his blog, I will make sure he gets back to telling you about his travels and other stories as soon as he feels 100% 

Jett B. Biking Jersey

I've been pretty sick lately and haven't had a chance to update my blog.  I've been in the hospital for the last few days trying to get better.  As soon as I feel better I'll tell you all about the last couple of weeks.

Right now I want to tell you about something else.  If you remember back to last September, the awesome Highmark group made some Jett B. biking jerseys and all rode to work in them.  (read about it here) After that, Mommy and Daddy had a lot of people ask them where they could get a Biking Jersey.  Since we didn't make them, they weren't really accessible for other people.  Thanks to Jett Mountian Bike Gear, there are now Jett B. Biking Jersey's available.  (Notice a similarity in the names?)  Thanks so much to them for stepping up and helping out.

The Jersey's are made for mountain biking, but can obviously be used for any type of biking (or other modes of exercise).  Thanks to everyone for following my journey.

If you are interested in one Go Here

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!!

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.

Love,
Jett

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.

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 fighterjettboseman@gmail.com.

Thanksgiving

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.