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!!

Ear Tube Surgery

Yesterday was Jett's ear tube surgery at Children's Hospital in Omaha.  He has been experiencing chronic ear infections and has also failed his most recent hearing tests.  We also noticed that he has been vomiting more often, but it wasn't necessarily related to his reflux.  It seemed that any sort of movement, whether we were picking him up or turning him on his side, would trigger a vomiting episode.  I'm guessing that the fluid build-up behind his ear drums were making him experience some sort of motion sickness.  My poor guy!  

Motion sickness has to be one of the worst feelings in the world...and to have that ALL DAY, EVERYDAY?  Ugh. Not fun.

Ear tube surgery is typically an easy breezy operation and is performed on a routine basis.  It only takes about 10 minutes once the child is asleep.  Adults who receive the surgery don't even have to be put to sleep. We were really excited for this surgery because we knew that it would relieve the pressure in Jett's ears and help him feel better.

One HUGE concern, however, with any type of surgery for Jett, is with anesthesia.  He does not respond well nor can he be given the "normal" anesthetic medications.  

Jett's brain stem is severely affected due to his condition (Pontocerebellar Hypoplasia).  If you can remember clear back to your physiology classes...the brain stem helps regulate body temperature as well as a number of other very important things.  This puts Jett at risk for Malignant Hyperthermia.  If interested, you can read about it here, but just know that it's pretty scary and can be life threatening.

Whenever our anesthesiologists hear that Jett is at risk for this condition, red flags come up everywhere.  They become a little "more on their toes" and aware of the implications of giving Jett the wrong combination of anesthetic.

I have to say...the anesthesiologists here do a FANTASTIC job.  

They are so caring and attentive. I am continually amazed at their professionalism and compassion.

The surgery went wonderfully!  

When the nurses brought Jett back to me, he had cold rags wrapped around his arms and in his diaper to prevent a temperature rise.  He was still really sleepy and would get in such a deep sleep that his heart rate would drop pretty significantly.  However, after a little stimulation, his heart rate would come right back up.

Jett is pretty mad about his mint-green hospital nightgown that he had to wear.  Oh and this is what I look like at 6 a.m. Pretty awesome...no makeup on.

Right after surgery with his cooling rags around his arms.

Just cuddling with his teddy bear

We were able to go home after a few hours and I can already tell that both Jett's hearing and vomiting has improved.  Yay for a happy baby!  That makes for a happy mommy and daddy.

On a side note, whenever I leave the hospital here in Omaha, the nurses all give me a hug and give me words of encouragement.  How nice is that?!  I am a big fan of nurses and doctors and anesthesiologists and enterologists and pretty much anyone in the medical field who knows what they're doing.  

The end.

P.S.  Sorry for the horrible pictures...they were taken from my phone!

Extreme Sports

Well it turns out that Jett loves extreme sports.

Who would have thought?

The other day, we made our way to Vala's Pumpkin Patch in Gretna, NE with a bunch of my friends.  It was a BEAUTIFUL fall day and we had so much fun.  Vala's Pumpkin Patch is the Disneyland of all pumpkin patches.  It was amazing...everything from humongous jumping pillows to go-carts to the yummiest kettle corn on the planet.

Just ridin' the John Deere train

Chilling on the jumping pillows with Jett's besties, Dax and Berrett.

 I'm guessing the reason Jett is mad in the picture above is because we had to get off the go-carts (pics below).  It turns out he is more of an extreme sport baby...I was trying to play with him in a "sand" box made of corn kernels and he hated it.  He would rather feel the wind run through his hair.  His long, luscious locks of hair.

Yeah right.  Maybe he'll have hair by the time he is three, but even that is a long shot!

Regardless, we had a blast.  I was happy to find out that I can still do some "normal" things with Jett.  I don't necessarily have to hold back with him.  Yes, I do have to be careful that goats don't eat his feeding tube and that he is safe, but overall, we were able to do all of the activities at the pumpkin patch.  Victory!!

A true "ACTION" shot...I could NOT get the go-cart going for the life of me.

And for the finale, we have made PEACE with the goats! Jett and I fed them our kettle corn and they were loved it, but who doesn't love popcorn covered in sugar?

No feeding tubes were harmed this time.

Surprises from September

I know that I have mentioned how amazing and lucky we are to be where we are, but that feeling keeps getting stronger and stronger with each day of living here in good ol' Omaha.  Although it seems a little crazy that Cody decided to completely change careers and Omaha is definitely not our first choice of "nice" places to live, I am sure that it was meant to be.

It is really hard to be down on your situation or be sad about ANYTHING when you have such great people living near you.  I seriously love our neighbors and have so much fun hanging out with them.  They are very aware of our situation and have gone up and beyond to help us out whenever we need it.  I feel unworthy sometimes to receive such great support!

Case in point…

Meet the Winterholler's.  They are an amazing couple with the cutest twins you've ever seen.  Anyway, they showed up one night and surprised us with a painting for Jett.  Are you kidding me?!  Besides this being the coolest painting ever, it also matches Jett's room perfectly.  We now proudly display it right above his crib.  

Yup…cutest twins ever.

THANKS you guys!

Another awesome surprise this month came from Cody's cousins.  They are moving cross country from California to Virginia.  Even though it was a short visit, we were SO happy to see them.  Jett was being exceptionally good and let Dayna and Erin hold him for a few minutes.  They got a rare glimpse of the comfortable, peaceful Jett!

The next surprise really isn't a surprise at all…but Jett is cute.

This is "happy" Jett before his 48-hour EEG that occurred at the beginning of the month.  Jett's neurologists wanted to know once and for all if he is experiencing seizures.  It was all done in the comfort of our own home, which was nice.  The not-so-nice thing is that Jett had to have 23 leads stuck to his head with super glue and then had to stay in front of a video camera for 48 hours.  Ugh. 

 It was horrible!!  

I did not play by the rules.  I snuck him outside twice and actually ended the study at 26 hours.  I felt that Jett had exhibited all of his "seizure-like" behavior…and he was soooo uncomfortable.  Poor baby. It took me about two hours to take the leads off of his head, but once I finished, we rushed outside to enjoy the wind in our face and the sunshine overhead.  Jett even gave me some smiles.

We finally received the results this week.  Jett is NOT having seizures!!  However, his brain activity is very abnormal.  Even while Jett sleeps, his brain is incorrectly misfiring all over the place. 

 The constant activity in his brain is to blame for Jett's dystonia and chorea (stiffness/rigidity and involuntary movements).  The doctors didn't have to change any medication, however, which was nice for a change.  

The last surprise of the month came courtesy of a friendly goat at the Omaha Zoo.  First off, if you know me well, you are probably very aware that I am obsessed with goats.  I really would like to have one as a pet someday.  Now, I'm not so sure!  

The goat tried to EAT Jett's feeding tube.

Umm…not okay, goat.

Jett gave the goat a swift kick in retaliation.  Besides that, the zoo was so much fun!  The weather was beautiful and Cody got to come with.  It is rare to have time with Cody due to his crazy dental school schedule. 

And the best surprise of all??  Uploading the pictures from my camera and realizing that Jett is SMILING in this pic!!  This is a very rare occurrence people.  I hope you are as excited as I am.

Not Ready...

Today, Jett and I had an appointment with his physical therapist.  She had us come to discuss future equipment options.  I have to say that I wasn't too excited to go to this appointment for obvious reasons.   It just became too real for me. It absolutely breaks my heart that my son won't ever walk.  As other kids are outside running around in the sunshine, we were inside a hospital picking out the "best" wheelchair.  The physical therapist could tell that I was a little shaken, although I was trying to stay upbeat. Jett, however, seems to always know when to lighten the mood.  As tears began to well up in my eyes, he had the BIGGEST blow-out I have ever witnessed.  I don't think any of it even made it in the diaper!  Immediately my attention was on him and not the wheelchairs.  Thank you Jett!  He knew that I needed to be distracted at that exact moment.  I can't say that it was fun cleaning poo off of his entire body, but it at least gave me a good laugh.

The picture below is what we'll most likely be getting for Jett.  For right now, however, I'm not ready for it.  He's still my baby and I want to keep it that way for as long as I can.  I'll slowly come to grips with the reality of the situation, but for now I'll continue to dream of him running up and down a soccer field, or playing hockey, or throwing a football.  That day will come and I can't wait.