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

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