Even though we are in Nebraska...

Jett will always be an AGGIE!!

Utah State, hey, Aggies all the way…go Aggies, go Aggies, hey hey hey!

We have been cheering all day long.  Thanks to Hadley Mae (one of Jett's girlfriends) for sending us this cute outfit.  She wanted to make sure that Jett stays loyal to Utah State…and he will, don't you worry!

Jett was cheering so much that he slobbered all over his outfit…cheering is HARD work. 

Breakthrough

We have had a couple breakthroughs this past week at the Boseman household!  First off, we have had NO trips to the ER this week...and yes, I'm now knocking on wood.  Jett has had an amazing week.  He is now over his cold.  HALLELUJAH!

Side note: I am now going to be that annoying mom that makes you put sanitizer on when you come near us.  No, just kidding...but seriously.

Back to Jett's amazing week.  I know this sounds dumb to most people, but I was able to take Jett on an outing in his stroller, and I was SO excited about it.  My friend, Kayli, and I ventured down to the Omaha Botanical Gardens the other day.  The gardens are literally down the street from where we live and so we were able to walk there.  We should have taken pictures, but I think the heat and humidity got the best of us!  Jett was a gem the entire time.  I couldn't believe it.  We came back to the house and celebrated by popping some popcorn...haha!  I think I will find ANY excuse to pop some popcorn. I'm a little obsessed with my Mother's Day present.

Anyway, to make some longer stories short, I really have come to enjoy taking care of Jett everyday.  He seems to be out of pain most of the time now.  For that, I am SO grateful.  Other mom's will understand.  It is so difficult to see your child suffer.  Jett's "good" days are usually far and few between.  I feel so blessed that he has been happy these past few days.

Now on to some more breakthroughs!  Jett loves his new iPad app called Baby Bright.  It is a visual stimulation "game" for infants.  As I have mentioned before, we (along with the doctors) don't know how well Jett can see.  However, we know that he can see light really well and we also know that he can see black/white really well.  It is fun to see Jett's eyes actually engage in these pictures...and he might even like it! Wahoo!

At this stage in life, Jett should be reaching for toys, pushing himself up, and eating rice cereal.  Unfortunately, Jett will never be able to do these things.  However, Cody and I don't really dwell on that. We CAN'T dwell on that.  Here is what we DO dwell on:

1)  We have come to LOVE Jett with the utmost unconditional love.
2)  He does things that amaze us each day...they aren't things that typical parents would be proud of, but dang it, we're proud!!
3) His spirit is felt by EVERYONE that has the chance to meet him.
4)  He knows who WE are...he may never be able to say our names, but he doesn't need to.  His smiles and coos tell us everything that we need to know!

Headed to church! Yes, we actually have been to church TWO weeks in a row.

A lot of people have asked me, "Don't you just cry every single day?"  The answer to that is NO, I don't.  I'm not offended in any way by people asking me this.  From the outside looking in, I could see that our situation might make someone want to cry.  Sometimes I have my meltdowns, but in all honestly, I feel privileged to be taking care of such a sweet baby boy.  Yes, I get tired and yes, I get frustrated like any parent, but I don't cry about our situation anymore.  Things are becoming more routine for me and I am beginning to live my life again!  When we first got news of Jett's diagnosis, my world came crashing down.  I had never really pictured what my family would look or be like, but I was totally thrown a curve ball with this one!  How would I cope?  How would people treat us? All of these questions entered my mind and it was really difficult to deal with at first, but now I feel like a changed person.  I feel like each day is getting better and better.  Jett has taught me how to be strong.  He is such a stud and I'm so grateful that he's mine!

*This picture seriously melts my heart...it was taken after one of Jett's seizures.  

Two Emergency Room Visits in Two Days

We told the hospital personnel at the Omaha Children's Hospital to go ahead and reserve us a permanent spot in their emergency room.  They laughed at us thinking we were making jokes (which we are known to do), but this time we were kind of serious.  Jett and I had only been in Omaha for three days when we had our first scare.

Visit #1  

 

Jett has been recovering from a bad cold and ear infection.  He has been on antibiotics, but when we got to Omaha, it just seemed like something wasn't quite right.  His breathing became labored and he was gagging/choking more than usual.  I woke Cody up at 5:45 a.m. on Memorial Day because I had been up with Jett for three hours and just couldn't get him comfortable.  I could tell that he wanted to sleep so badly, but for some reason, had trouble doing so.  Cody came in Jett's bedroom and we did everything we could to help him.  We suctioned his nose and throat out, we vented his feeding tube, we held him and kissed him.  NOTHING.  That is when the wheezing started.  We usually don't take Jett to the hospital if we can help it.  Our house has become a mini hospital...all of the equipment could probably use its own living space.  Seriously.  However, when the wheezing started we knew that even our oxygen tank would probably prove worthless at this point.  

A breathing treatment, chest x-ray, and blood work were performed.  As we waited for results,  Jett was put on oxygen because his saturation levels were dipping too low.  The doc came back and informed us that Jett's x-ray showed some pulmonary edema...aka fluid in his lung.  AWESOME.  All I kept thinking is that Jett CANNOT get pneumonia.  If a PCH child gets pneumonia, it can be fatal.  We were told that we were going to have to be admitted to the hospital.

Cute little dinosaur breathing mask

Jett must have heard the docs talking about keeping him overnight.  He started to breathe better...he obviously didn't want to stay at the hospital!  The doctor said that the fluid in his lung was minimal and would probably be absorbed.  (I had no idea fluid could be absorbed into the lung...hmmm)

Anyway, we were sent home to enjoy the rest of our Memorial Day.  Jett celebrated by taking a four hour nap.  We celebrated by getting stuff done while Jett took a four hour nap.

Oh, and we now have an additional piece of equipment.  A nebulizer.  We can now do our own breathing treatments on Jett.

Visit #2

Fast forward to the day after Memorial Day.  Jett was having a pretty good day and just chilling on his little pad when all of a sudden, he let out the most painful shriek I have ever heard.  He got more rigid than usual and was shaking because he was in so much pain.  I immediately vented his tube because I could tell this was stomach pain that we were dealing with.  That didn't help.  Cody picked Jett up and took him for a walk.  That ALWAYS helps...well this time it didn't.  Cody returned and Jett was still in extreme amounts of pain.  I pulled out some tylenol and put it in a syringe.  Right as I opened Jett's port on his feeding tube, BLOOD comes spilling out.  Cody and I (obviously) freaked out.  We ran outside to get into our car.  It was gone.  That was when I remember that my parents had just barely left to run some errands.  AWESOME.  

My new neighbor is amazing.  I ran up to her door and frantically asked if I could borrow her car.  She quickly got the keys for me and we were off to the emergency room again.  Luckily we knew where we were going this time.  

We got to the ER and they all remembered us from the day before.  They began running tests and x-rays on Jett.  Four hours later, they determined that it was an ulcer that had caused the bleeding.  AND...we didn't have to stay at the hospital.  I thought, for sure, we would be staying overnight.  We now have some antacid medicine to help Jett when his tummy gets sore, but unfortunately the tummy pain will never really go away.  A lot of other kids with feeding tubes experience this similar pain.  Poor kiddos!

Nothing like two visits to the hospital to get your adrenaline going!  The last few days have been peaceful and quiet.  Just how we like it!!

SMILES

These pictures right here make all of our stress, fear, anxiety, worry, and sadness about Jett melt away. 

To put things into perspective, the pictures below were taken AT HOME after our first emergency room visit and before the next visit the following day.  We are so happy to have moments like this...I was tickling Jett's face with my hair as Cody played the guitar in the background.  Best ten minutes ever!! 

Jett in a JET

Jett and I made it to Omaha...all in thanks to a DEAR friend.  Due to Jett's condition, he is unable to fly commercially OR drive 14 hours in a car. We had the privilege of flying out to Omaha in a Citation Jet and got out here in less than two hours.  It was, hands down, one of the most generous acts of service that anyone has done for us.  We were so excited to be reunited again with Cody and Kusaba.  Jett must have known that he was flying to see daddy because he was on his best behavior.

I am so grateful for angels here on earth that make things like this possible.  We are loving Omaha so far...Jett was so excited to see the Children's Hospital here that we have ALREADY been to the emergency room with him.  TWICE.  More to come on that later.

Here are some pictures from our trip.  Grandma and Grandpa Watts bravely took to the skies as well.  If you know my mom, you know that this is nothing short of a miracle!  She was on her best behavior too...only grabbing my dad's arm a few times when we hit turbulence.  Good job mom. 

"Let's fly this thing!"

A Walk in the Park...should be easy, right?

Today, I attempted to be a "normal" mommy...epic fail.  For those that know me well, they know that I can't sit still.  Therefore, when I got pregnant last year, my husband was sure to add "baby jogger" to my list of baby needs.  I was SO excited the day we bought our jogger.  I would lay in bed at night (in between getting up to go to the bathroom) and DREAM of the day that I could take my baby outside and go jogging.  The visions in my head included a nice summer breeze, birds chirping, the sun shining, and one happy baby bouncing along.

Well, today I got three of those things...minus the happy baby part.  As I took care of Jett earlier today, my frustrations of being stuck inside the house boiled up inside of me. The sun was shining outside and we were missing out!  I decided to do something about it. I unhooked Jett's feeding tube from the pump, put on my running shoes, and pulled out the stroller.  We were going to enjoy some sunshine, dang it!

I snapped Jett in the stroller and captured this pic...he actually looks pretty excited, right?

Well, fast forward five minutes later...this is Jett at the park absolutely LIVID that I put him in his stroller

So, here is what I did...

1) After this picture was taken, I took Jett out and cuddled him for a second, but to no avail.
2)  I vented his feeding tube (For those unfamiliar with this procedure, it's like "burping" a baby, but instead, you open up a tube that releases bubbles directly from the baby's stomach)...that didn't help
3)   I strapped him back in his stroller and made sure that his feeding tube was safe and secure.
4) Made sure Jett was still breathing in between his bouts of coughing and gagging.
5)  And I ENJOYED my walk...I listened to the birds chirping, I felt the sun on my face, and I even got a small workout in.

When we got back home, I was sure to give Jett lots of love and attention.  He was one tired baby and quickly fell asleep in my arms...happy, I am sure, to have escaped such a traumatic experience. *wink wink

A Child Loaned

Today, sweet Maia (who lives in England) passed away.  I had mentioned her in my last post. She was only 8 months and had Pontocerebellar Hypoplasia Type 1. It has been a sad day for everyone in the PCH community.  Another mom who I have connected with (you gotta love the Internet!) sent me this poem the other day.  I hope it is okay that I am posting it.  She, too, has a little boy with PCH Type 2.  His name is Rudy.  If you want to learn more about their story, click here.

This is for Maia's mum, Michelle...and for the rest of us with angel babies.  I know we are all in mourning here on Earth, but heaven has received a new angel.  I bet Maia is dancing around the heavens, breathing with perfect lungs, and discovering what it feels like to be pain-free!

"Holding Anger is a Poison"

There aren't any pictures to post this week...just wanted to get some of my feelings out.  This week, I have been ANGRY...angry for many reasons.

1) Angry that Jett is sick-- he has a bad cough and fever and has been in extreme amounts of pain this week.  Why the pain?  I have no idea.  I have to say that watching your child suffer has to be the WORST possible feeling in the entire world.  Even Dr. Dobyns, in Seattle, had no words of advice for me.  He is the "all-knowing" doctor for pontocerebellar hypoplasia and still doesn't know why these babies experience bad tummy pain.

2) Angry that my husband and dog are in Omaha and that we aren't out there yet.  Jett and I miss them like CRAZY, but are staying behind for some post-operation appointments.

3) Angry that babies all over the world are suffering.  In particular, a sweet little 8-month-old, named Maia, who is close to leaving this world.  She has PCH Type 1, which is very severe, and her breathing has gone downhill quickly.  She and her family live in England.  They are going through an extremely tough time right now (obviously) and my heart goes out to them.  Another little boy, Carter, is 4 years old, and is recovering from a tracheostomy surgery at the moment.  He has PCH Type 2 and has experienced more complications from this surgery than ANY child should have to go through. He is such a trooper!  Also, my sweet Lila (who I have talked about before) is suffering from a bad kidney infection.  She has a fever of 105 and is now on IV antibiotics to hopefully kick this thing.  Like I have mentioned before, she has a rare condition, called Vici Syndrome.  She is an absolute angel and it kills me to know that she is suffering too.

WHY????

You can obviously tell that my anger has led to frustration and confusion.  I'm sure that all of you have experienced these stages of grief before, whether it was actually dealing with a death or something else.  At first, I was in denial about Jett's diagnosis.  I was sure that he would be the PCH "superstar" and be the one to talk and walk! In my mind, he was only going to be sick for a couple months and then would bounce back and be a "normal" kid. Second, I have experienced immense amounts of guilt.  I feel horrible that I brought him into the world to only have to FIGHT every single day of his life.  I have to keep telling myself that he doesn't know any different.  He doesn't know that he could enjoy drinking from a bottle or be tasting sweet potatoes on his tongue.  He doesn't know that there is a whole world out there for him to see.

So now I'm at the anger stage...and trying desperately to get out of it!  Anger does not make you feel good.  You treat yourself and others differently. It eats at you to the point that you become obsessed with whatever you are angry at.  I don't like it!!  I am not that kind of person.

It should so happen, in my rants of anger, that I came across an amazing passage in a book that I am re-reading, called The Five People You Meet in Heaven. 

The main character in the book has lived a life of anger and feels like his life has been one with no purpose.  To make a long story short, he dies, and meets five people from his past that explain what his life's purpose was.   One of these people explained how anger affects us...

"Holding anger is a poison.  It eats you from inside.  We think that hating is a weapon that attacks the person who harmed us.  But hatred is a curved blade.  And the harm we do, we do to ourselves."

After reading that, I decided to turn over a new leaf.  I'm not going to be angry anymore.  I am going to take each hour as it comes and put my TRUST in the Lord.  Although we may not understand why we have been dealt a rotten hand, our Heavenly Father has everything planned out perfectly.  He knows what is best for us.

With that said, I am so grateful that I get the privilege of being in Jett's presence daily.  He is truly a celestial being and is here to teach me what is most important in life...FAMILY and UNCONDITIONAL LOVE. 

Our Week in Pictures

Jett's lip is looking great! It is healing so quickly.  He is supposed to be wearing a Logan's Bow (metal bar) across his face to protect the lip and nose area for four weeks.  It has only been one week and I have taken it off.  It became more of a hazard than anything.  Jett would get such a tight grip on that thing and try to pull it off his face.  He is much happier now that it's off...and we are keeping a close eye on him.

We had the privilege of meeting Lila, another angel baby, last week.  Her parents, Kristi and Quinn, are absolutely amazing and inspire me to enjoy my precious moments with Jett.  Lila has a rare genetic condition called Vici Syndrome.  She is 22 months and is already surpassing the odds.  Her little personality is so cute and I feel so lucky that we were able to meet!

In case you haven't heard, we are moving to Omaha, Nebraska.  Corn fields and cows...here we come!  Cody made it safely and is fixing up our new house before Jett and I move out there.


 Cody and his friend Jason made the trek out there.  Jason took good care of Kusaba.  I heard that they were best buddies for the entire trip. 

 





 Jett has been spending a lot of time outdoors and is loving it!  I caught this precious moment the other day.  This is Jett's cousin, Naomi, and she loves him so much.  They like to hold hands and lay in the sun together.

My first Mother's Day!!  Jett must have known that it was Mother's Day because he was so good the entire day.  We even managed to get to church...amazing, I know.  Although I loved spending the day with my family and Jett, I sure missed Cody.








He made up for it, however, by buying me this huge popcorn machine.  I cannot wait to get to Omaha to use it.  We are definitely going to host a few movie nights at our place!



 






I received these flowers the other day from some friends who now live in California.  I was extremely touched that they thought of me on Mother's Day.  Aren't they beautiful??

 Jett was able to hang out with his Logan cousins this weekend (Brennan and Jemma are pictured above).  He was the happiest baby on the block!  Here he is (below) telling Rylan, his 10-month-old cousin, about all of his hospital visits...

 Jett:  "And then...they poked me with a needle...and then, they missed, so they had to poke me with another needle..."

Rylan: "Shut the front door, are you serious?"

Jett: "Oh there's more...and then they put this huge tube in my tummy."

Rylan:  "No way, let me see!"

We sure are going to miss living in Salt Lake...Jett got to hang out with his Grandma Sherrie and Grandpa Jerald everyday.  They better visit us a lot in Omaha! For now, Jett and I are up in Logan staying at Grandma and Grandpa Watts' house.  Jett gets daily cuddles from both of them.  He sure is LOVED!!

Jett's Flight Plan

Take JETT around the world with you!

***WARNING*** 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 fighterjettboseman@gmail.com , 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!

http://1791.shop.musictoday.com/Product.aspx?cp=50107&pc=BXCT089

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!

A JETT T-SHIRT!

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).

Jett already wants his own space!

Were plan on keeping this blog updated with all the important Jett updates, as well as our daily lives.  But as we will be moving to Omaha in the very near future Jett wanted somewhere that he could write about his daily accomplishments.   He will try to update it more often than we do ours, so if you are following our little fighter's story, you can read more about it at Jetts flight plan (or fighterjett.blogspot.com).

A note from Jett...

Hi everyone!
           I just wanted to give you one last look at my cute cleft lip before I go into surgery this morning.  My mom and dad are a little worried that they are going to miss it when it's gone.  I keep telling them that I'll be the same baby with my new mouth, but they don't believe me!  I love you all.  Thank you for praying for us...mommy and daddy really need it right now.

Love,
          Jett

Recovery from surgery…just in time for another

 With the weather warming up, Jett and I have gotten a little cabin fever from being stuck inside the house.  Since we can't go too far from his feeding pump and suction machine, we have hung out a lot in the backyard.  Jett loves tasting the wind on his tongue and loves hanging out with Grandpa.  Kusaba usually tries to steal Jett's spot on the blanket, but Jett uses his strong legs and kicks him off.

Jett's incisions are healing nicely from surgery and his stomach/intestines have awoken from their deep slumber and have finally started working!  This week has been MUCH better in the vomit and reflux department.

Jett has had a lot of fun hanging out with cousins and the grandparents.  He seems to be feeling better…the unfortunate thing, however, is that Jett has ANOTHER surgery scheduled for this Thursday.  Our little Jett man is getting his cleft lip surgery.  I can't say that I'm excited. First off, I think I am going to miss his unique smile and, second, I am super nervous about his recovery.  For healthy babies, the hospital stay is usually just overnight.  I will consider it a MIRACLE if we only have to stay this long.

  Jett tasting the wind on his tongue.

Jett and Grandpa Watts soaking up the rays

 Yes…this is Jett in a STROLLER!  This is the first time that he has stayed in a stroller without arching out of it (due to his dystonia).  It was a victory for everyone, including Kusaba.  You can clearly see that he is super excited.  Haha.

We love those eyes!

Good Decision?

Cody and I wrestled for weeks with a tough decision regarding Jett.  Due to Jett's condition, it is likely that he won't ever be able to take food by mouth.  Therefore, we looked into a more "permanent" feeding option for Jett.

We ultimately decided on the Gastro-Jejunal Tube.  This is a surgical procedure that places a feeding tube directly into the small intestine (the jejunum) by way of the stomach.  We were told that Jett would need to stay overnight for observation following the surgery.

Well, Jett's surgery was on Thursday…and we didn't get home until today (Sunday).  The surgery went fairly well, but Jett experienced and is STILL experiencing some complications from the procedure.

Here are a few things that our little guy has dealt with these past couple days:

• Possible seizures - a bad reaction to the anesthetic
• Horrible reaction to morphine
• Vomiting up bile and blood
• Bad tummy pain OBVIOUSLY
• Infection where his incisions are
• Deep suction procedures that require me to stick a tube down his nose/throat and suck out all of the stuff that he chokes on

I am feeling like a horrible mommy right now.  We seriously should have just kept the tube that went through his nose and throat.  I was under the impression that this G-J tube was going to make Jett's life much easier…umm nope.  

We will see what the next few days bring.  I really hope that Jett's little GI system starts working properly.  I feel so bad for him and SO HELPLESS.

I know I say this a lot, but Jett is one tough baby.  I truly feel like he has the spirit of a warrior inside his frail body.  When he opens his big blue eyes and looks around, you can see the heavens.  

At the hospital, he would be lying there somewhat incoherent and then I would touch his arm.  He would immediately lift up his arm and hold it there so that we could hold hands.  It was as if he was saying to me, "I'm okay mommy, don't worry."  

Seeing Jett go through this breaks my heart.  It makes me wonder WHY little children have to suffer at all.  

I am very grateful, however, for this experience.  I have become stronger than I ever thought possible.  Cody has become the best daddy and husband as well.

The other day, I received a sweet card from a former next door neighbor in Logan.  Their family has been through some extremely tough trials in this life.  I was so touched with what they had to say.  A part of the card said, 

"This is a time when heaven touches earth.  It's a time when family is EVERYTHING and the world becomes far less important.  Its a time when we turn to our Heavenly Father and submit to his will, because he knows the beginning to the end."  

WOW.