Hibernation

I have now been working on this post for about five weeks now...and finally getting around to actually publishing it.  You would think that with my title, "Hibernation", that I would have gotten around to publishing sooner!  

It is true, though.  Jett and I are hibernating until spring decides to roll around.

This winter has been nasty; and I'm not talking about the weather.

SICKNESS!

Frankly, we are sick of it, and I bet you would agree.  

EVERYONE has been hit this season including us.  

There is a more detailed account HERE about what Jett dealt with, but let's just say that we are glad that he stuck around.  It was incredibly scary there for a bit and we were worried that we might lose him.  We weren't quite ready for that to happen (we never will be) and he wasn't ready either.  He wanted to show us how strong he really is.  I would prefer to not have him be forced to prove that again.  It takes a toll on everyone.  

Get ready for major picture overload below.  

I did  A LOT of baking over the holidays and loved every minute of it.  I jammed out to the Christmas radio station and test-tasted all of my cookie dough...to make sure it was safe, of course.

 The day before we traveled back to Utah, we found out that my parents' dog, Buddy, passed away.  He was really sick with pneumonia and his kidneys were failing him.  I begged my parents to keep him alive (he had to be put down) for one more day so that I see him, but Buddy was too sick.  

He was such a great dog and companion for my dad.  I always looked forward to taking Buddy and Kusaba for walks together.  They would always try to bump each other off of the sidewalk as they walked.  Oh...and his breath.  He had the stinkiest doggie breath EVER.

I miss him, but he's happy and healthy now in heaven.

The first day back in Utah was a beautiful, sunny day.  Jett and I had some fun in the sun.  He loved feeling the warmth on his face and gave me some good smiles.  This was, of course, before the dreaded sicknesses hit.

Cody's dad, Jerald, turned the Big 6-0 while we were in Utah and we HAD to throw him a surprise party...only because he hates them so much.  A huge crowd showed up to celebrate.   We had fun dressing up in the "photo booth".

Jett was wiped out toward the end of the party and cuddled with his Aunt Tiffany (my sister).  She has the special touch.  Cody and I try to imitate how she tickles Jett's head, but can't do it quite like her.

Tiffany and I were able to spend some quality time together...pedicures, Cheesecake factory, and wearing mustaches as we drove around Salt Lake.  

We spent Christmas up in Logan with my side of the family.  Our Christmas Eve party was definitely something we'll remember...for both the good and the bad.  

The good:  Our White Elephant party.  Let's just say that Cody and I are the king and queen of white elephant gifts.  Is that something we should be proud of??

The bad: This was the night that we discovered that Jett was really sick with something...we just didn't quite know what yet.  Poor baby.

Our first trip to the ER...at Logan Regional Hospital.  Definitely not our favorite hospital, but when you're in a pinch (no pun intended), you go there.  This is where we found out Jett had C. Diff.

By the way, if you understood my pun above, props to you. Hee hee.

Even though Jett was terribly sick, we tried to still make the best of our trip.  As you can see, I let Cody play dentist on me, but I didn't get any happy gas.  Booooooo.

We also went out to eat a lot.  That's what you're supposed to do during the holidays, right?

Second trip to the ER with Jett for some IV fluids...this time at Primary Children's Hospital. 

Back home in Omaha, things took a turn for the worse.  I tried to keep Jett at home throughout his sickness since we have all of the required medical equipment.  However, his lungs began to worsen and I didn't want to chance anything.  Jett ended up at the Omaha Children's Hospital for five days.  It was a little stressful, to say the least, because during his stay, I came down with the flu bug.  I was DOWN and OUT.  The hospital nurses didn't want me there until I was feeling better.  That was somewhat difficult to be laying in bed at home while your baby is deathly ill in the hospital.  Not fun.

            

"I will conquer!!", says Jett.

Flash forward to today, we are on the mend! We are so ready for spring to be here.  Honestly, the winter hasn't been that bad, but I think we need some warmth and sunshine just because.  

 I am super hesitant about going out where there might be a lot of germs.

 I've turned into Mama Bear, so watch out.  

"Put that hand sanitizer on NOWWWWWW!" roars Mama Bear.

A Special Connection

Without going into much detail, there could have been MANY reasons for Cody and I to skip church today. Everything was going against us, it seemed, but we rushed to get there regardless.  We arrived just in time for the Christmas program to begin.  The choir began to sing and the spirit immediately filled the room.

Jett loves music.  At first, he was quite restless, but once the music began, he became still and content.  Cody draped Jett over his shoulder as we listened to the beautiful music and he drifted off into sleep.  As the choir began to sing, "Away In A Manger", I felt a tap on my shoulder.  I turned around to find an older woman standing there.  She was about 50 years old and had Down Syndrome. She was frail and you could tell that she was recovering from cancer treatment.  The woman quietly said, "Oh you have a special baby" as she touched Jett's little head with shaky hands.  "He's so special," she repeatedly said.  I put out Jett's hand for her to hold and she stood there through the entire song stroking his fingers.

Cody and I looked at each other in amazement and we couldn't help but smile.   Reason being...we have some good friends who, too, have a child with special needs.  About a year ago, they had this SAME exact experience at church.  What an honor to have seen that sweet exchange between two of Heavenly Father's choicest children.  I think they know a lot more than we do about how this world works; or, at least, how it should work.  If we only knew what they know, this world would be a different place.

Needless to say, I had to leave the meeting for a minute because I was so overwhelmed with emotion.  What a special gift we received today.  I am so grateful for that woman and for the unconditional love she displayed.

Our thoughts exactly

The past week I have ran in to 2 different blogs from special needs parents.  Its amazing to read them because, the thoughts and feelings that they described are completely in line with what we feel and think.  If our parents or close friends were to read these, they would think that we wrote them.  Thank you so much to the authors for putting your feelings to words, and expressing the things that we feel but cannot transfer to paper.

We're not special parents

What I would tell you

Thanks to those that pointed me to these blogs.

Jett is ONE!

We were so happy to have celebrated Jett's FIRST birthday with so many of our friends and family.  The birthday celebrations went perfectly and there were no big fires to put out (literally).

It truly has been a crazy year and we have ALL been through a roller coaster of emotions with this sweet, little boy.  It was so nice to CELEBRATE his birthday and remember all of the positive things that have happened this past year.

Cody and I had decided early in the year that we wanted his first birthday to be a huge deal.  We knew that we wanted to light off wishing lanterns, but didn't quite know how it was going to work out.  When we ended up ordering 300 lanterns, we knew we were in for a great party!  We sent 100 lanterns back to Utah to give to our family and friends so that they could celebrate with us from afar.  Here in Omaha, we delivered about 100 lanterns around our neighborhood and then kept 100 lanterns so that we could pass more out at the actual event.

Below is the invitation that was sent out, along with the poem that I wrote to give out with each lantern (printed on the picture collages).  

Over 100 people showed up to help us celebrate!!  Conditions were perfect...no wind and no fog, which we had been worried about earlier in the day.  We lit the lanterns off and they all floated East over the Missouri river.  It was such a magical moment.

Afterward, we all came back to the clubhouse and had all sorts of "In-flight snacks and beverages", which included hot chocolate, Capri Suns for the kids, donuts, airplane suckers, and little airplane treats made out of Tootsie Rolls and lifesavers.

In the clubhouse, I set up a display to celebrate Jett's Flight Plan, which has been taking place this past year.  I put up pictures of our friends, family, and complete strangers wearing the "Jett" shirt all over the world.  It was so neat to see all of the places Jett has traveled so far.

Thank you to those who have been a part of our lives this past year.  We truly are blessed to know you!

A big thank you to Jett's grandparents, as well, who all made the trip out here to celebrate with us.  We loved having you here and Jett LOVED cuddling with you.

To Jett,

 You are one amazing little boy.  I am humbled and grateful to be your mother.  You have taught me more things over this past year than I have learned my entire life.  You have taught me what it means to be strong and how to be patient.  You have taught me how to appreciate the little things in life and to celebrate the tiniest of accomplishments.  Your presence in our home brings us so much JOY.  Happy 1st Birthday!   

Love,

        Your mommy 

It Gets Better

This past week has been exceptionally tough on me for some reason.  I don't know if it's the changing seasons or if I'm just tired, but it was different. Taking care of Jett has gotten the best of me and really tested my strength and patience.  I find that when Jett is experiencing bouts of pain and distress, I have to disconnect myself from the situation.  My "nurse" instincts (who knew I had them?) have to take over. 

Is he breathing? Kind of...check.
Is he choking?  Not anymore after suctioning his throat and nose...check.
Is his feeding tube irritating his skin?  Yes it's red and inflamed.  Lidocaine applied...check.
Has he gotten his scheduled medications?  Yes, next one is in an hour...check.
What is his temperature?  100.4...hmmm, something is up.

I go through this check list OVER and OVER about ten times a day, if not more. 

IT. IS.EXHAUSTING.

I think the whole "disconnecting" thing is a defense mechanism of sorts for my emotional stability.  If I didn't do it, I would be crying all the time.  Crying out in anger and guilt that my sweet, little boy has to go through so much.  Sad over the fact that he can't enjoy a visit to the Children's Museum or a ride in his stroller.  I just don't get WHY he has to suffer through it all.  

With a special needs child, I have heard that the first year is the hardest.  Hard because you don't know quite what you're dealing with, at first, and hard because of the unpredictability of their day-to-day as well as their future altogether.

I decided to approach my PCH (Pontocerebellar Hypoplasia) Facebook group about this and ask the question, "So I need some honest answers here...what was your first year like with your PCH child?  Does it get better?  Furthermore, does the CHILD get easier to take care of or do you feel that YOU were able to deal with things better?"

Here were some of their responses:

1) "It was AWFUL. So bad I have blocked most of it from my memory. I couldn't drive anywhere. She cried ALL the time. She wasn't social. It sucked. She got much easier. She is happy all the time now. Only cries when she's sick. She smiles and laughs and had a personality. It will get better. Just hang in there."

 2) "Yes the first 2 years were tough, heck, they were horrible, he cried, all the time, no matter what we did...once we got things figured out, and got him on the right meds, it did get better...he wasn't as sick as much, probably we were able to deal with things a bit better as well. just recently things have gotten tough again.  He is a lot better now, he smiles and gabs our ear off. shows us when something is bothering him with facial expressions...THINGS WILL GET BETTER!!!!

 3) "The first year was unbearable! I think I said "I quit" every night. He would cry 24/7 & we had sooo many issues. The 2nd year has had challenging periods but is a bit better (or maybe we are just getting used to things). It wasn't until a few months ago that I actually felt comfortable to leave him with a sitter because I wasn't afraid he would scare them away!"

4) "It gets much better and much easier. i can hardly remember the 1st year i think. lack of sleep and anxiety/grief/anger. but we settled in with our son, changed our expectations, went to therapy (it really helps!), did some soul searching and realized that all the negative makes those small bits of positive SO WORTH IT. now we do things we never imagined we would do! hang in there!!!"

After reading these responses and many more, I breathed a HUGE sigh of relief.  THINGS WILL GET BETTER.  They just have to...that's all there is to it! 

Fighter PILOT Jett Boseman

I wanted Jett to be a super hero for Halloween and for some reason it was taking me FOREVER to think of a good costume.  Should he be Batman, Superman, Mr. Incredible, Buzz Lightyear??? I was at a loss as I kept reeling over options in my mind.  They all just didn't feel right.

It wasn't until last week that the lightbulb finally turned on...DUH! 

Jett needed to be a FIGHTER PILOT.  

Those serving in our nations troops are our true super heroes and it is no coincidence what happened next.  Literally the day I decided that Jett was going to be fighter pilot, we received a package in the mail.  As I opened it, tears came to my eyes....like huge, alligator tears.

Utah's Alpha Company 1-211th, a combat air squadron, had sent Jett an amazing gift.  One soldier, in particular, had heard Jett's story and wanted to do something for us.  Cameron Landies (pictured below) ordered a "Jett" shirt for his entire squadron and had them shipped to Afghanistan.

On July 4th, they flew a mission over Afghanistan and proudly wore their Jett shirts.
In addition to this, they also placed an American flag inside the cockpit in Jett's honor.

Inside the package we received was a neatly folded American flag, a certificate of authenticity (proving that Jett really did take part in a mission for our nation!), and a "Jett" shirt SIGNED by every member of the squadron.

Cody and I were both blown away with this gift...seriously one of the coolest gifts ever.  It was so thought out.  Many hands had to take part in this gift to make sure that it was carried through and completed.  We are so grateful.

How funny for a package to arrive like that right after I had decided Jett was going to be a fighter pilot!

Anyway, I quickly ordered a flight suit and then had a good friend make his hat.  I needed a cool way to incorporate his feeding pump backpack...thus it became his parachute backpack.

The pictures below are of Jett on Halloween (posing in front of his very own American flag might I add!) and then the air squadron who took part in such a precious gift that we will cherish forever!!

Grocery Store Victory

Jett and I reached a huge milestone today at the grocery store.  I can now shop hands-free!  This little dude sat in his carseat the whole time.  He cried at the beginning, threw up twice, and then started looking at all of the lights.

 He may have even started liking his carseat.  

Dare I even say that?? 

Toward the end, he started to fall asleep in it.  You probably don't understand my excitement, but I literally want to shout for joy from the rooftops.  Every little success (no matter how small) deserves to be celebrated and this is definitely one that I will celebrate.

Jett's SWAG

We are constantly amazed and grateful for the generosity and thoughtfulness of others.

Jett is one lucky guy.  He receives packages in the mail on a weekly basis from wonderful friends around the world (but mostly Utah...whoop whoop!)  In these pictures above, Jett is decked out in some running gear from Run Disney, a koala bear and boomerang from Australia, a cute football outfit, and some autographed pictures from all of the Disney characters.  Seriously? So cool. 

I have always known that there are good people in the world, but since having Jett and finding out his diagnosis, this level of "good" people has reached a whole new level.  I am extremely humbled by this opportunity to raise a child with special needs.  At times, it is difficult, but never once have I thought about giving up.  First off, I CAN'T, and second off, there are people in my life (and Cody's) who continually show their support in numerous ways.  

We feel YOUR love and we feel God's love constantly.

Thank you for always thinking of us and Jett! 

Coincidence? I think not.

Do you think it's any coincidence that BOTH sets of grandparents booked a trip out to Omaha 

after seeing this video?

Yeah, me either.

 

Jett is getting his two bottom teeth AND his top tooth (which I just barely noticed). 

 He has been one ornery camper, but you can't tell in this video. 

Cute, little stinker!

On a side note:  Yes, BOTH sets of grandparents are coming out for Jett's first birthday in December. 

We are so excited!!

Interaction

After Jett's bath tonight I put him on my bed and lay down next to him.  He was giving me some cute smiles after I would kiss his chin.  It was so nice to see him relaxed and alert. Those two things don't usually coincide...he's either relaxed and ASLEEP or alert and MAD.

After some time doing this, I went to the other side of the bed and called his name to see what he would do.  It took a couple seconds, but he slowly turned his head toward me like, "Yes, mommy?"

Cutest thing ever.  I may have cried.

Sometimes I wonder if he knows who we are, but tonight, he told me himself. 

Special Kiddos

The chance of having a child with Pontocerebellar Hypoplasia is one in a million, if not more.  Thanks to technology, I have been incredibly lucky to find other parents around the world who know A LOT about the condition.  They, too, have children who were born with PCH.

There are maybe 50 children (just a guess) around the world who suffer from this heartbreaking condition.  Through our special Facebook page, we, as parents, have become close friends.  At a time when we could feel so alone in the world, we have an outlet where we can vent, ask questions, and share stories about our special children.  This support system is priceless because they KNOW what you are going through and can empathize on a deeper level.

I am a big fan of Jett's doctors.  However, PCH is such a rare condition, that many doctors haven't heard of it.  They have to do a fair amount of research to be able to prescribe the right medications and such.  When I have any questions related to the condition, rather than go to the doctors, I go to my Facebook friends first.  Their advice is so helpful.  I don't know what I would do without them!  Even the doctors ask ME a lot of questions about the condition so that they can learn more about it.  

We are all learning and growing together.

With the permission of the parents, I wanted to share some pictures with you of these beautiful children.  A couple of them have passed on, but many are still with us today.  Some live in the United States and others live in Europe and Australia.  Severity of the condition can differ for each child.  Some experience seizures, others do not.  The oldest child with PCH is 15 years old right now (not pictured), but the average life span of a PCH child is around 4 or 5 years of age.  

It can be a sad world to live in knowing that you are going to outlive your child.  However, through this support system, we are able to get through life's struggles together.  

I have a true love for these children and I feel like I know them.  They are such strong spirits and put up a courageous fight every day of their lives.  

Enjoy!!