Our First Jett Powered Success

Our first Jett Powered event was held on Saturday, July 20, 2013 and was a smashing success!  Thirty-six amazing athletes showed up to support the foundation and perform an intense workout, appropriately named the "Jett Powered" workout.  Each athlete paid a registration fee of $20.  In addition, some athletes were sponsored for reps completed, which made them work even harder!  

The "Jett Powered" Workout

30 Minutes to complete AMRAP (as many reps as possible)

100 m Run

10 Ground to Overhead (using barbells)

10 Burpees

10 Air Squats

10 Hand Release Push Ups

This workout was intense and was a test of endurance for each athlete.  However, we all thought about how strong Jett is, which gave us all motivation to work hard.  Some even said, "If Jett can power through, WE can power through!"  

Jett was, of course, there to witness the event.  He was so excited about the workout that he fell asleep mid-workout as athletes were dripping sweat and working their hardest! 

Total donations received from this event came to $1700!! That number is still growing! Thank you to all those who made personal donations, bought Jett t-shirts, and, of course, participated in the workout.

This event brought people closer together for a great cause!  We had so much fun joining forces with the staff at Fit Farm Crossfit and plan on doing another Crossfit competition in the future.

And we're OFF!!

Check out all these athletes killing their workout!

Our helpers, Tessa and Taylor…thanks guys!

The FIT FARM Crew and athletes post-workout…and Jett, of course, post-nap!

Summer Days

It has been two months since our last update. Why do I do this to myself?  So much has happened between now and the beginning of June that I get anxiety thinking about making this blog post!  Unfortunately, I cannot get into the nitty gritty details of how good our summer has been, but I will try to write a quick synopsis of the important events.

Chillaxin' next to Lake Manawa (Iowa)

First and foremost, we are LOVING summer in Omaha.  Cody has a month break off from dental school and we decided to stay here rather than travel back home.  A little selfish...yes, but we really REALLY love our night nurses (for Jett)!  We have been able to work on some important projects and have been able to enjoy what Omaha has to offer, which is definitely not cool weather...or mountains, but oh well. We have spent a lot of time with our friends here and even made a little trip to Lake of the Ozarks in Missouri.  That trip will have to appear on my next post!

In addition to our great summer, Jett has not had ANY hospital visits.  Can I get a whoop whoop?!  Our little man is doing better than ever.  We have made enormous strides with him the past few months, especially with his feeding tube diet.  He is interacting with us a lot more and is more alert than he ever used to be.  Sure, he still isn't the typical child running around and playing, but I feel that we have done a lot with him to help him enjoy the world around him.

As mentioned, Cody is out of school for a month.  He took his first round of dental boards at the beginning of July.  Preparing for this massive test is pretty much the worst thing ever.  He is required to remember EVERYTHING that he has learned thus far.  This includes anatomy, physiology, microbiology, and a lot of other subjects that I probably can't even pronounce.  Anyway, he received his scores back the other day and he PASSED!!!  This basically means he is awesome..and that he can continue being a dental student.  I'm so proud of him for working so hard AND still making time for me and Jett.

Check out Jett's new ride (below).  Even though Jett still feels like my baby, he is getting bigger each day and growing out of his car seat and stroller.  It was a few months in the works, but we were able to get Jett his first wheelchair with the help of his doctor and physical therapist.  It is actually pretty awesome.  I thought I would cry and throw myself onto the floor when we finally received it, but I didn't.  I was so excited!  It took awhile for Jett to be excited, however.  He doesn't necessarily like being restrained, so we had to find the perfect fit and I think we found it.  When Omaha isn't super hot, I love taking Jett and Kusaba for an evening jog. Yes, I can jog with this wheelchair, which in my mind, is the best feature EVER.  I still can feel like a normal parent! We blast the tunes from my phone and ride into the sunset.  

As you can see below, Jett like to hold my hand as we bounce along.

I know I have mentioned how much I like my Facebook group for parents of children with PCH (Pontocerebellar Hypoplasia),  but I wanted to share something that came from those connections that I've made online.  In the picture (above) is a family that I connected with and had the privilege of meeting in person.  This sweet family lives about 15 minutes away from us (in Nebraska) and has two children with special needs.  The oldest child (the one I'm holding in the picture) has cerebral palsy and her little sister is undiagnosed, but has the symptoms and behaviors of a child with Cerebellar Hypoplasia and PCH.  It was an honor to meet with them and be able to relate on so many levels.  The mother, Jessica, was a great source of information for me and I really admire her perseverence. We keep in touch over Facebook and plan on meeting up again soon.  

Toward the end of June, Cody and I were able to cross something off of our bucket list.  For the longest time, we have wanted to attend a concert at Red Rocks Amphitheater in Denver, CO.  Back in March, we found out that one of our favorite bands, O.A.R. was going to be playing there.  We bought tickets in hopes that we would get something worked out for Jett.  Well, we made it work!  Jett was able to stay at Children's World for the entire weekend, which means that he would be under full-time care of nurses.   It was so nice to get away from Omaha for a bit and have some rest and relaxation.

Cody's brother, Peter, lives in Denver with his family.  We enjoyed hanging out with them for a day.  Cody, being the rebel uncle that he is, helped the kids sneak onto this HUMONGOUS bounce house that was being used for a private party. He definitely earned his "Favorite Uncle" badge. 

Annnnddddd…the concert was nothing short of amazing.  The scenery was beautiful and the music was incredible.  Aside from saving a drunk girl from falling to her death twice, Cody and I had the best time together.  As you can see below, we still took Jett along with us. Unfortunately, I feel like we need to add another concert at Red Rocks to the bucket list.  We had too much fun that it needs to be experienced more than once.

The 4th of July did not disappoint this year…although I was completely fireworked out by the time it was over, which is a sure sign that I am getting old.  The day was full of food (we hosted a breakfast and dinner bbq with friends), parades, and the College World Series Home Run Derby that is held in Omaha each year.  If you know us well, you know that we're not fans of baseball.  However, the home run derby is a lot more fast-paced than a regular game, so we actually enjoyed it.  Jett wore ear plugs during the firework show and did amazing considering that he was teething horribly.

The pictures of the food (above) are from my new Instagram account under the tag "Paleo Plate".  Cody and I have started CrossFit together and have been trying to eat healthier as well.  We try to avoid any foods with dairy, soy, or gluten in them…so it's not the simplest way to eat and you definitely have to prepare each day.  However, we love it and have found some great recipes. I set up this Instagram account so that I could save my favorite recipes.  It has been so much fun researching and creating new recipes.  The reason I mention this is because, for the longest time, Cody and I have wanted to switch Jett to a blended diet.  This means that we would blend up real food and put it through his feeding tube.  Jett's little gastrointestinal tract wasn't responding well to his formula and he was always in pain.   Well since Cody and I have felt SO much better after starting this diet, that we felt that we should change Jett's diet as well.  Guess what?  Jett has responded remarkably well!!  He is gaining weight finally and is hardly in pain anymore.  Jett's gastroenterologist and nutritionist were never on board with my idea, but I went forward with it anyway…and I'm so glad that I did.  The changes I've observed with Jett are seriously night and day.

For those interested (mostly my fellow PCH moms), here are some ingredients that I put into Jett's blends using my Vitamix:

Coconut milk, avocado oil, paleo protein powder, sweet potatoes, peas, cooked chicken breast, chicken stock, carrots, pineapple, blueberries, banana, apple, coconut cream, sunflower seed butter, almond butter, and flaxseed.  I rotate different ingredients around daily, but always make sure that there is a nice balance of fats, carbohydrates, and protein.

We hope everyone is having a great summer!

The Fam Damily Comes to Town

What a vast difference ONE month can make!  This is the view outside of my kitchen window...I remember back in April thinking, "Wow, this is SO depressing."  There was no sign of spring.  It was freezing cold and raining constantly.  As a mother to a child with special needs there is only so much you can do inside a house.  Jett and I were going crazy to say the least.  We needed some sunshine!  Thank goodness spring finally hit Omaha.  Check out those green leaves!  We love spending time outdoors now.  It makes me happy inside and makes the day go by a lot quicker for some reason.

Over Mother's Day weekend, both sides of the family came out to witness Cody receive his "White Coat" for Dental School.  This basically means that Cody has worked hard enough in school to start clinical work on real patients.  Yeaaaahhh buddy!!  The ceremony itself was super boring; in fact as we were sitting in the auditorium, Maddie, my niece, said, "We drove ALL the way out here for some guy to read a list of names???"  Yes, unfortunately, you did drive all the way to Omaha for some guy to read a list of names.  As unexciting as the ceremony was for a 7-year-old, we did get to witness Cody receive his white coat, however...and that, my friends was exciting.  He is now 50% a dentist!!  The other 50% is still the accordion-playing, wakeboarding, humorous, Mr. Fix-It, and handsome guy I married.  Hopefully that NEVER changes once he is 100% dentist.  We wouldn't want him to get all super boring on us, now would we??

                       I think Jett was a little bored with all of the picture-taking shenanigans taking place.  Either that, or his medication was kicking in...I'll bank on that one.

In this first picture, I'm sure Cody is thinking, "Take the freaking picture!"...he was standing in front of about 500+ people and I kept making him pose differently. 

The White Coat ceremony was how we conned our families into coming out here, but really we just wanted a babysitter for Jett.  Okay, just kidding.  No, we really wanted to see them and show them how BIG Jett has grown!  Over the last couple months, Jett has gained over 3 lbs thanks to his new medication; a medication that helps his tight muscles relax.  Three pounds doesn't seem like a lot, but when you are going from 13 to 16 lbs, you can definitely see (and feel) the difference! 

Of course, all of the grandparents had to cuddle with our little cuddle bug...yes, he cuddles!  It is the best thing ever.  Since starting this new med, Jett has been so much more comfortable and happy.  He is starting to be more responsive and interactive. I feel like now, as parents, we are just dealing with his disability rather than trying to figure out why he is in pain.  I hope it doesn't come out as insensitive that we are "just dealing with his disability", but I feel like we can cope a whole lot better just knowing that he is not in pain all of the time.

Since Jett was healthy and happy this go-around, we took him and our families around Omaha.  We hit up some great restaurants and the Farmers Market in Old Market, went antique shopping, walked across the pedestrian bridge into Iowa, went to the Omaha Zoo, and enjoyed celebrating Mother's Day together.  I especially had so much fun with my niece and nephew, Maddie and Sean.  They are the happiest and funniest kids!  On Mother's Day, I took pictures of Tiffany (my sis) and them in front of my favorite graffiti-covered building.  I am no photographer, but I think the pictures turned out great.  Of course, having cute, photogenic subjects might have helped a bit.

Oh man, I love them!

Here we are with Cody's parents in Old Market, which is only 5 minutes from our house.  We ate at a yummy restaurant called Blackstone.  I highly recommend it!  The best part was that it was finally a nice day in Omaha and we sat out on the patio.

Now, please take note of the picture BELOW...

notice how "nice" my husband is when he finds out that I BIFFED it big time on the slides.

Yeah, real nice.

Okay, and I HAD to add the picture below because we're going to play a quick game of "I Spy"...

I spot a large piece of equipment that probably weighs 10 lbs and uses VHS tapes.

Love you Dad! Haha.

 

 

The last day that our family was here, I planned a piano recital so that they could hear all of my cute students play.  My students did a great job and Jett, also, did not disappoint.  He threw up TWICE during the recital. I don't think the little dude was feeling that great, but I think Sean helped him feel better by giving him head tickles.

 

 

Aren't my piano students the cutest?  We all had to flex our piano-playin' muscles.

After the recital, my side of the family had to leave.  It was a sad goodbye for all of us.  I love this picture below of my parents and then the one of Tiffany.  Jett might not look the best (he had just vomited), but you can see the love in my parents' eyes for my little boy.  They are so sweet for making the trip out here to see us.  I know that they would drive across the entire country to see Jett so I'm glad that Omaha is, at least, only a day's drive away.  We can't wait for the next visit!

 

 Cody's mom, Sherrie had to leave a couple days later.  However, before she left, we went boating on Manawa Ocean...ahem...I mean Manawa Lake.  The water was super rough, but we still had a good time.  Jett loved his cuddle time with Grandma!  

We miss them ALL already!  Can't you all just come back??

Let's Remember the GOOD

Darn it!  Another hospital stay with our Jett man.  

He had been doing really well too...those darn $#&@%$ viruses will get you every time.  I'll give you quick details on the hospital stay, but then I really want to focus on how GREAT Jett's month really has been.

On Thursday, Jett started showing signs that he may be sick.  He had been congested for the previous week, but I attributed that to allergies.  In fact, that very day, I had gotten a prescription for Claritin in hopes that it would help his stuffy, mucousy (is this is word?) nose.  Well, he began to develop a fever.  Tylenol and Motrin weren't helping.  I went to teach dance in the afternoon and came back to a very irritable and hot baby.  His temperature was at 102, which is never fun, but a temperature I can deal with.

Over the course of two hours his fever jumped up to 105...and that, my friends, is when Cody and I jumped in the car and took him to the hospital (Omaha Children's Hospital).  Usually we feel comfortable keeping him at home when he's sick since we have all of the medical equipment, but when a temperature reaches 105 it can get scary...and it did.  Within minutes of his temperature reaching these dangerous heights, Jett began seizing (small seizures), his teeth started to chatter, and his color turned blue.  Cody and I immediately put him on our pulsoximeter to check his oxygen levels.  He was dipping down into the 70's.  Not good.  Luckily we have oxygen tanks in our home.  Even though Jett hated every second of it, we taped the oxygen cannula to his face and away we went to the hospital.

At the hospital, Jett received all kinds of needle pokes and tests.  Results came back positive for Parainfluenza 3 and Rhino Enterovirus.  Poor Jett had TWO viruses to fight.  The docs quickly booked him into a room and observed him from there.  They also had Cody and I update Jett's DNR.  If you don't know what a DNR is, consider yourself lucky.  We really do not like making those difficult decisions.

I captured this sweet moment at the hospital.  It was about 1 a.m. and Jett was miserable.
Daddy to the rescue!

In these two pictures, Jett is saying, "It's okay Mom...I got this."  What a stud.

He was able to come off of oxygen within 24 hours and is now resting up to get rid of that stinkin' fever.  We are at home now and Jett is loving his snuggle buddy...a doggy rice bag. 

 Random, I know, but he loves it. He smooshes his face into it as he is sleeping. The last I checked, he didn't have a temperature so hopefully we're on the up and up!

Now, for the details of Jett's FANTASTIC month...

Up until the beginning of March, no medication could even TOUCH Jett's chorea.  He was miserable almost 24/7 because his poor little body couldn't stop tensing up and moving.  It was really painful for Jett and extremely painful for us to watch. Well, the neurologist decided to try Jett on a new medication that is only used in the adult population...Adults who suffer from Huntington's Disease.  At this point, we were desperate to try anything.  The medication, itself, you are unable to get in a regular pharmacy.  Therefore, we had to wait for it to be shipped to us.  I won't get into the nasty details of HOW blasted LONG it took to get to our doorstep, but we were super excited when it showed up.

The drug is called Xenazine (Tetrabenazine) for those who are curious and I feel that it has done wonders for Jett.  He is a different kid! Not only has it calmed him, but he has become more aware of his surroundings as well.  He focuses more on our faces and listens very intently to anything we say.    We are also discovering his unique ways of interacting with us, including MORE SMILES!  An even bigger bonus, Jett is gaining weight finally.  He is now up to a stout 13 lbs 10 oz.

I gave Jett his first popsicle!  He loved it, but then choked on the juices.  It's all good, I just had to suction him out.  It was still worth it for the smiles.

Jett went on his first road trip to Kansas City.  He was seriously an angel the entire time.  

For more on that trip, click HERE

 We also visited the Lego sculptures at the botanical gardens that are right by our house.  Jett learned how to push a lawnmower with daddy.

He dressed up with me for St. Patrick's Day and also took a horsey ride on Kusaba. (Bottom left pic)

We visited the zoo and the jellyfish were Jett's favorite part. 

 He loved the bright colors and how slow they were moving.  We probably stood there for an hour.  Im sure people were like, "Get a move on, lady!"

We've enjoyed the spring weather that is headed our way and hopefully here to stay...

and Kusaba stays true to form by always photobombing our pictures. Good doggie.

 Jett also learned to bite my nose.  

It's a shame that such great progress had to be impeded by sickness, but we are going to focus on the positive and kick these viruses in the a@@!  Better days are ahead.