Jadon is SIX + a few weeks

Jadon is 6 years old…plus a few weeks.

Jadon turned six on the 25^th of June and a funny thing happened this year – we were busy.  We were busy LIVING life.  We celebrate our big hero every single day and we have always gone BIG for his birthday month, but this one kind of snuck up on us.  We forewent the big party for a gathering with a few of his close friends.  And what fun they had!

This year, we celebrated his birthday by going bowling – a first for Bug.  Afterwards, we all went out for pizza where he opened presents and then proceeded to take a nap…at the restaurant.  Phew, partying can sure wear a kid out!   The Saturday following his birthday was Bad News Bears baseball and for the third year in a row Jadon ran the bases with his team.  Following the homerun trot his team sang happy birthday to him at home plate.  This is definitely a highlight of the whole year.

 

The pure miracle of Jadon doesn’t come to mind on a day to day basis.  It is the milestones where we stop and look around at where we are.

SIX YEARS.

Three times the prognosis of SMA Type 1.  The really strange thing is that these days seem to be our best days yet.  We don’t like to say too much positive stuff in fear that SMA will rear its ugly head reminding us of its horrible power over our lives.  So, we’ll say it softly, just once…he’s doing awesome.

Jadon has completed kindergarten and will be entering the 1^st grade this fall.  He has friends from school, friends from baseball, and even has friends who come to read to him in the summertime.  Not to mention all of his friends across the country, ones he has met in person and others on-line.  He loves baseball, being outside, playing games, watching movies and rolling his eyes at his little sister’s crazy antics.  He is a six year old little boy.

 

A week before Jadon’s birthday was the national SMA conference which was held right here in Kansas City.  This was an incredible experience as we got to see many families we already knew and others we had never met.  There were many families who have been fighting longer than us, families who had just been diagnosed and families that look forward to one day seeing their loved ones in heaven.  It is something to see families at all these different stages of the SMA journey.

We have been fighting this fight for almost six years and when we hear someone say they just got diagnosed it takes us right back to THAT day.

On this day (July 16th) six years ago Jadon was 3 weeks old and we were yet to hear the words Spinal Muscular Atrophy.  We were yet to have our lives turned upside down.  We were yet to understand how strong our hero would have to be.  How strong we would have to be.  Jadon has been through a lot in six years.  There have been some extremely scary days that we thought would be our last but there have been far more beautiful days.  Days where his eyes sparkle just a little brighter.  Days when the faint giggle on his breathe is a little louder.  So many days that we thought we would never have.  So while the SMA storm rages on within our life we will continue to find new ways to “Dance in the Rain”.

This Saturday, Jadon is going fishing with his buddies…..another first.

The Birthday Haul

BUG RUN 2015 pics

The 2015 BUG RUN was held on April 11th.  We continue to be amazed at the turnout as well as with the overall atmosphere of the event.  The BUG RUN has become a gathering of the community and the support is nothing short of overwhelming.  From all of our sponsors to all of those who participate, the love for Jadon and the fight against SMA is evident.  Acts of kindness abound and one small example is the fact that all of Jadon’s Kindergarten class registered for the run.  An anonymous donor paid for those who would not otherwise been able to attend.  It is because of gestures like this that we are constantly talking about how blessed we are with those who God has chosen to surround us with.

We are already looking forward to next years run and looking for ways to make it even bigger and better.
SEE YOU NEXT YEAR!!

 

Jadon- “The BUG”

SMA Mommas and their Warriors – Kaden & The BUG

The National Anthem

I Run In Honor Cards
SMA Warrior & Angels

Patrick Fazio from Action 41 News & Rocket from 93.3 The Mix

 

 

 

IT WAS A VERY VERY GOOD DAY

 

Jadon’s Hope Foundation Partners with Jacey’s Journey to Fund Angel Arms

The gift of mobility is often lost on many.  Truth be told, prior to Jadon’s diagnosis it was something we too took for granted.  Our eyes have since been opened.  With a disease like SMA, watching your child be robbed of this gift is heart-wrenching.  Often times we find ourselves yearning and longing for movement.  Any movement.  No matter how minimal or slight.

We would like to introduce you to Melissa and Allan Kloiber, Mom and Dad to adorable Jacey and founders of Jacey’s Journey.  Like so many SMA parents, they wanted Jacey to experience what had been lost.  They wanted to see her thrive and be able to reach for the world around her like so many kiddos her age.  And so began their quest to make it happen and the invention of the Angel Arm.

 

 

 

 

 

 

 

 

Gravity is the worst enemy to a child with extremely low muscle tone.  By reducing gravity, movement can often occur when it would not have otherwise.  The counterweight of the Angel Arm takes the pull of gravity off the child’s limb enabling them to move.  The device is developed to be used in any direction, on any limb.  While we could go into the technical aspects of the device, seeing is truly believing.

 

 

Simply put, the Angel Arm helps SMA Type 1 kiddos move.

 

Grace Grutter, mom to sweet Nella, summed it up beautifully when describing Nella’s initial use of the Angel Arm:

“I was in tears yesterday…With the help of Nella’s new angel arm, I was able to see her reach for a toy for the very first time in her life! It was such an amazing moment that I will forever be grateful for. Nella was so determined to grab it, and was SO proud of herself. She was smiling SO big! What a huge blessing to be able to have this moment.”

We have been inspired by the determination the Kloibers have demonstrated in developing this device and building them for other SMA families.  Melissa and Allan only charge for materials and shipping, not for the extensive time spent lovingly building or packaging the Angel Arm.  Despite only charging for materials, the device may be too expensive for some families.  Because of this, they have set up a wish list for families asking for funding of the arm.

 

Jadon’s Hope Foundation is proud to announce we have issued our first grant to help fund the Angel Arm wish list.  JHF wants to see every child who wants an Angel Arm to have an Angel Arm.  We are committed and prepared to do more if the need arises.    We believe so strongly in what the Kloibers have created that our hope is to do all we can to help get kids moving.

As SMA families it is important that we all continue to support each other through this life storm.  Necessity is the mother of invention and where there is a need SMA families find a way.  If you would like to directly support the efforts of funding Angel Arms you can do so at the following link.  Every dollar donated through this link will go directly to funding Angel Arms for families.

 

 

If you are an SMA Family wanting to learn more about the Angel Arm, please click on the following link.

 

 If you would like to apply for financial assistance for an Angel Arm please use this link.

 

 

 

Right Where We Need To Be

Kristin and I moved from the Rocky Mountains of Colorado eight years ago today.  I couldn’t have put a good reason for the move onto paper and there certainly is no camera in the world that could justify a move from Breckenridge Colorado to KANsas.  However, I grew up in Kansas (Topeka) and always thought I would return someday, and with Kristin’s sudden onslaught of “Snow Allergies” (Apparently not everyone likes 7 months of snow) the timing seemed right.

We took a week and toured the Kansas City area, on both sides of the state line and looked at over 30 houses.  Before we pulled in front of our current address in Olathe we knew our realtor was not only representing us but he was also selling this particular house (the coveted “double dip”).  What we didn’t know until the van went into park was that the price was going up $5,000 from what he had quoted earlier.  His actions put my temperature on the rise and I was also about to learn that my wife has NEVER played poker in her life.  We walked in the front door and her mind began hanging pictures and placing furniture.  The house was great but on the higher end of our budget and back in the van I suggested we at least offer $5k less (which took it down to the price from earlier in the day) Our realtor simply shook his head no.  Disgusted, I insisted on looking at more houses and wanted to find something different.  I was determined to find something different.

We didn’t find something different.

Today, 8 years later, I FINALLY release the anger I harbored for our realtor.  I now realize that THIS house is where we were meant to be.

Assuming Jadon and SMA were our destiny, I now see that this was “Our House” before we knew it. I don’t typically like to play the “what if” game, but today I indulge.

Our house in Colorado sat at 10,000 feet above sea level and Jadon most likely would not have lived to his diagnosis at 2 months of age.  Lack of oxygen does not mix well with SMA.  We most likely would not even know about SMA, but instead we would have a very short story of unexplained tragedy.

Many of the houses we toured were split level, with bedrooms on the top floor, kitchen half a story down, and the living area on the bottom floor.  Maneuvering Jadon up and down those stairs would have been a challenge.  In this house we can wheel him to the bedrooms, living room, and kitchen.

Schools didn’t weigh into our decision at the time but we knew there was an elementary school across the street.  What we didn’t know is how much that school would impact our lives.  We found an amazing church that continues to stay in contact despite our inability to attend regularly.  Infant toddler services and Jadon’s case worker have been incredibly helpful and we now call them our friends.  Of course being close to so many of my longtime friends and family has been a blessing.

School was something we had given up on for Jadon but this year he completed a full year of pre-school with an amazing teacher and incredible faculty.  They continually said “yes” when it would have been easier, and understandable, for them to say “no”.  When Jadon couldn’t attend class because of cold and flu season he became the first student in the district to Skype into the classroom.  The PTO contacted us and said they would like to do something for the Foundation and the fight against SMA: The 1^st annual Jadon’s Hope BUG RUN was born.

Jadon has been a part of a little league baseball team.  While he is physically unable to participate, to be included is so incredible.  On Tuesday (6-25-13), Jadon’s 4^th birthday, following the game Jadon “ran” the bases and the team sang Happy Birthday to him at home plate.  It was a night never to be forgotten.

This past weekend our church refurbished our neglected landscaping for us with a concentrated work day of 15 people.

Last night our new friends (from that school I mentioned) threw a birthday bash that any 4 year old boy would love.  It was a sports theme with Star Wars characters.  They went all out and would not allow us to do anything.  They said it was a day for us to simply enjoy.  ENJOY we did.  It was both emotional and amazing.

So we may have paid $5,000 more for our home because of greed but I am soooo glad my foolish pride didn’t cause us to live somewhere else.

I certainly believe there are good people around the world but I believe that God has surrounded us with the best people for us.  We continue to be humbled and recognize the blessings surrounding us.

FIRST DAY OF SCHOOL!!!!

Jadon Skyping with his class

BUG RUN

Happy Birthday after rounding the bases

Yard Day

Birthday Party

Happy Birthday BUG

 

 

 

 

Long Distance Doctor’s Appointment

 

A long distance Doctor’s appointment is simply an opportunity to “Dance in the Rain”.

Jadon sees the amazing Dr Schroth (SMA Specialist) once a year.  The downfall, some would say, is the fact that we have to drive 8 hours to see her.  She is based at American Family Children’s Hospital in Madison WI.  While her expertise is worth every minute of drive time we also like to make a mini vacation out of the trip.

This year’s trip was very enjoyable and much less stressful than last year.  At this time last year Jadon was having MAJOR episodes where his Oxygen saturation would sometimes drop to ZERO.  To say we were on HIGH alert is an understatement.  Since his trach surgery in August we have not seen those extremes and we are working on relaxing……. just a little bit.  However, we fully realize we won’t ever be completely relaxed outside of our comfortable bubble within the SMA Fighting BUG Cave.  It only takes a short while outside the cave to fully appreciate the conveniences we have at home.  Simple things like, an outlet for every piece of equipment, counter space, and most importantly…raised work space.  Jadon’s bed, treatment table, and living room cart are all at counter top height which makes for easy transfers, easy treatments, and easy play time.

But……a BUG’s gotta dance!
So we venture out.

Ayden, Ella, and Jadon

This year we altered our course and headed for Omaha to visit the world famous zoo as well as the world famous Ella and Ayden.  We came in the night before and then visited the zoo on Saturday.  It was not the most pleasant day but we made the best of it and truly had a great time.  We danced in the rain…literally.  It was pretty chilly and very rainy but we visited the indoor exhibits and visited with our SMA family.

Sunday we headed  for Madison (a 7 hour drive) and stopped off outside Des Moines to meet up with The beautiful Stella Bella.

Stella and Jadon

On Monday we traveled to Fond du Lac WI to get some frozen custard from Gilles and more importantly meet up with Lucy and Mateo.

The whole group

What’s up dude?

Sweet Lucy

Tuesday it was time to work but not without it’s visitations as well.  Of course we got to see Dr. Schroth (who we love) but we also got to meet Peyton for the first time.  Such an amazing young lady.

The Amazing Dr Schroth

 

Peyton and Jadon

Snacks for Dr Schroth

Bone Density Scan

X-rays

Only a 7 hour day at the hospital but well worth it.  We rested that night and headed for home on Wednesday morning.

It was a great trip.
Not necessarily relaxing, but very fun.  It is worth so much to see Jadon happy and out doing things.

“Life isn’t about waiting for the storm to pass,
It’s about learning to Dance in the Rain”

Even little sister did well.

LOCKDOWN

Tis the season!  Tis the season to batten down the hatches, stock up on supplies, put up the signs, and start the inquisitions.  That’s right, it’s LOCKDOWN 2012.

Winters can be hard for SMA families.  Because a common cold could literally be fatal for someone with SMA, extra precautions are taken.

We wash our hands hundreds of times a day and therefore must stock up on our hand sanitizer; this is our first shipment

We put up our signs:
“Wash your hands and wipe your feet,
Come in this house sick and you’ll get beat!”

We start the inquisitions of anyone coming into our home:

“Are you sick?
Have you been sick?
Are you thinking of getting sick?
Have you been around anyone who is sick?
Heard of anyone being sick?”

We don’t want “sick” in our house.

While we lock out the outside world it also means that we are locked in.  It makes for an incredibly long winter.  Just ask Perry the Platapus, he doesn’t care for our “lockdown reindeer games”.

Cabin fever sets in and we long for any kind of contact to the world outside these walls.

This year we are getting it!

Jadon started pre-school this year and while it was difficult to stop going just before Halloween, Jadon’s teacher has taken his inclusion to a new level.  Miss Cathy, has arranged for Jadon to Skype into the class each morning for a short period of time.

For those that don’t know “Skype”, it basically means that using a computer in our home we can SEE and HEAR the class.  Using a computer in the classroom, Jadon’s class can SEE and HEAR us.  It is AWESOME!

Jadon absolutely loves seeing his classmates.  Miss Cathy has taken it even further to include Jadon in the Halloween parade and also on a recent field trip.  She carries the laptop around with her so Jadon can see everyone and everything.  While Skyping is not the same as being there it is a very good substitute.

We are so “super” thankful for all of Jadon’s classmates as well as Ms. Patti, Ms. Pam, Ms. Melene, Mr. Dave,  and most of all for the amazing, incredible, “High Tech” Ms. Cathy.  Thank You Rolling Ridge Elementary, GO Rockets!!!

Big Decisions…

When Jadon was first diagnosed with SMA, having trach surgery was not part of our care plan for him.  Looking back, we know that initial reaction was based on fear.  Fear of the unknown.  Fear of having a tube sticking out of his throat.  Fear of not understanding what a trach meant. Just plain FEAR.

As you know, over the past several months Jadon has been having severe respiratory distress episodes causing his heart-rate and oxygen levels to plummet to the point where we are wondering if “this will be the last time.”  A feeling no parent should be faced with.  Not to mention, these episodes are very stressful on Jadon’s little body – something we don’t want to put him through. After much research, speaking with other amazing SMA families and a lot of prayer, we have decided to schedule a tracheostomy surgery for Jadon the last week of July in Madison.  This is a big decision – one we haven’t taken lightly and haven’t come to quickly.  This is what is best for Jadon at this time.  We firmly believe that each parent must make their decisions based on their child and their family.  And this is exactly what we have done.

So what does the rest of our summer look like?

Well, we leave for Minneapolis on Wednesday (June 20^th) for the Families of SMA Conference.  We are extremely excited to meet and connect with so many other SMA families.  They are anticipating over 1,100 attendees from 21 countries – WOW!

On Monday the 25^th our big boy turns three years old.  (How cool is that?)  We will return to Kansas City with a three year old on the 26^th.

Jadon’s surgery is scheduled for the week of July 30^th.  We will be inMadison for at least two weeks (who wants to watch some beagles? :)).

Jadon is scheduled to start pre-school on August 16^th.  Phew…. where did the summer go?

While I don’t consider this blog “bad news,” other than the fact that the disease is progressing, we are holding on to some really GOOD news.

You will have to check back tomorrow for the REALLY GOOD news.  I can barely stand it.

Madison Trip

On Sunday May 27th we departed Kansas City heading from Madison Wisconsin.  The trip is our annual pilgrimage to see Jadon’s specialist, Dr. Schroth.   We always look forward to meeting with her and this year was no different.  However, Jadon has been having some major episodes while on bipap (they are very scary) and we were extremely nervous about the trip.  As it turned out, the first 86 hours of our 90 hour trip were perfect.

Sunday – the 8 hour drive was smooth and Jadon traveled like the champion he is.

A guy has to relax after an 8 hour drive.

Monday – (Memorial Day) We visited the metropolis of Fonda Du Lac Wisconsin and got to see The Incredible Smiling Lucy.  That sounds like a carnival name.  Oh and we got to see her parents Barb and Noah as well.   Their hospitality was great and we were served an amazing steak dinner, wow.  Then we visited the famous Gilly’s Frozen Custard, it really is all that Barb constantly says it is.

Watching a movie with stadium seating.

Tuesday – A very long day at the hospital clinic getting poked, prodded, and x-rayed.

Bone Density Scan

Upper GI (looking at his belly)

 Good ole’ x-ray

Not sure how excited Dr. Shcroth was about Jadon naming “Mary the Monkey” after her.

Wednesday – Woke up early but didn’t leave early

Met sweet Ella and her parents Erica and Dan back at the hospital before we took off.

Had dinner outside of Des Moines with Stella and her amazing family, Sarah, Travis, Sayer, and Treyton.  Can’t believe I didn’t get a picture of the whole family.  So good to hang out with such inspirational people.

After dinner we were just on this side of  Des Moines and our worst nightmare came true, an episode in the car.  We pulled to the shoulder of I-35 and performed our life saving techniques.  This was a very very scary time and all we kept thinking was that we did not want to lose him on the side of the highway.  We got him back up and stable and a Highway patrol woman pulled over to see if we needed an ambulance.  We refused of course (this is the crazy life we lead).  They would not be able to tell us anything we didn’t already know.

We have made adjustments to Jadon’s diet as well as his medication in hopes of curbing his episodes.  We are still planning to attend the FSMA conference at the end of this month.  We are absolutely celebrating Jadon’s 3rd Birthday on the 25th (in Minnesota).

We will be re-evaluating Jadon’s care plan in mid July and if these adjustment have not made the difference we are hoping for we will be making a major change.

Jadon Got His New Stroller

After nearly 6 weeks of waiting Jadon received his new stroller yesterday.  It is an Easy S (stage 2) and it is really nice.   The best feature that we have used so far is the high/low base.  The seat removes from the stroller base and attaches to another base that we will only use inside the house.  This base literally lowers to the ground or raises to the height of the kitchen counter.

Jadon got to help Mommy get the food ready for book club last night.  It was so great to have him in a different environment than just the living room or his room.  The base is on wheels and therefore we can roll him into any room in the house and even out on the deck.

Now we just need to get a minivan and we will be mobile.  The stroller can actually be anchored in a van and act as the secure seating system.  The plan is that we will have all of the needed equipment on the bottom shelf of the stroller and simply roll him in.

Looking for vans is no fun at all.  I did find a heck of a deal on one but I had to wire the money and the van is in London…..but the shipping is paid for.  RRRRrrrrrrrrrrright!

The search continues for a van but we are very excited to have the stroller.

ONE YEAR

370 days ago our dreams for Jadon were much like every parent with a two month old.  We wanted him to grow up and be someone special.  Not necessarily in the eyes of the world but in the eyes of the people that matter to him.  We wanted him to have experiences like every kid.

We saw him climbing every thing he could, like Kristin did.  I envisioned him jumping his bike into the side of the house and skinning his knee and bruising his head, like I did.  (I know, that explains a lot)  We envisioned ourselves watching from our office window as he dragged his book bag home from the elementary school across the street.  I expected that call from the principal when he snapped some poor girl’s bra strap.  We saw him graduating high school and hopefully going on to college.  We saw a young man that we would be proud of no matter how he turned out.

We are so very proud of him right now.

One year ago today the test results came back confirming that Jadon has SMA type 1.  Our lives were turned upside down and our dreams were shattered.  Our “normal” was gone and replaced by something that we are still trying to figure out.  The one thing that I am certain of is that he has changed our lives forever.  Forever he has changed us for the better.

Things around here are not always smiles and laughter, but the fact that he is able to smile and laugh after everything he has to go through, shows me that I have nothing to complain about.  It is amazing the things that I have complained about in my life that just don’t matter.  We are truly living every single day for the moment.

I truly don’t know how we would have made it without the support we have received from our family, friends and sometimes complete strangers.  We have been continually overwhelmed at everyones generosity.  I still don’t know how to truly say thank you loud enough or strong enough, but I only know to keep on saying it.  Thank you, Thank you, Thank you.

Tony