When Your Legs Get Tired, Run With Your Heart

 Amy Vrban & Kristin Burks

WRITTEN BY AMY VRBAN
Race Director – Jadon’s Hope BUG RUN

I have greatly enjoyed seeing everyone’s pictures from the Bug Run yesterday! It helps me see all I miss and see the enjoyment that was truly had at this event! I was overcome with great emotion at several moments. Moments I could talk about all day, moments I will never forget, and some so powerful no words are required.

SMA. I never knew how much those 3 little letters would impact a life. In return the impact that life would have on an entire community. Jadon. I was asked 4 times yesterday why I think Jadon has surpassed life expectancy. I don’t have the answer. Certainly not medically. What I see is a beautiful child who teaches us to love one another, encourages us to come together and help each other. To help each other beyond our own friendship and boundaries. Jadon has brought a community together to fight for all childhood diseases. He shows us how to live without giving up hope and beyond limits. To live each day and be thankful for it. Because of Jadon new friendships and bonds have been made. More and more people everyday are seeing the effects of SMA and ways they can help a devastating, terminal disease, come to an end. Jadon’s hope. His parent’s hope. His family’s hope. My hope. Friend’s hope, our committee’s hope, the community’s hope, hope across the country, hope around the world. It’s spreading and everyone can help!

Jadon’s parents have an endless love and passion for their children which has spread into the Foundation. Inspiring and infectious. Their kindness, love, passion, and dedication will touch your heart and soul.

I am thankful for every single person who registered and gave their money to such a wonderful cause! I am thankful for the silent donations and those who continually want to give! Thank you to all our sponsors who are new and have given to the Bug Run for the 3rd year! We couldn’t do it without you! It’s overwhelming to say the least. People helping other people!

Spreading HOPE and awareness! I am blessed to have a wonderful committee who share the same passion! They are an amazing group of people who work so hard in different areas and in different ways but they all give all they have.

Every single volunteer! Over 150 volunteers came out to help and gave their time to help make this, a fun, safe, and enjoyable event. Thank you!

Pictures from the event will be posted in the next couple of days and I’ll keep you posted on that!

We look forward to the 4th annual Bug Run in 2016! Fun things are already being planned!

Look for us in the Old’s Settler’s Day parade in September! We’ll have the Bug Run date set! Please visit http://jadonshope.org to keep up with the latest news and happenings with Jadon and the Foundation!

In the mean time keep hope alive, keep fighting and running!
And remember; when your legs get tired, run with your heart!

Heading to Disney World

Jadon Burks what do you plan to do NEXT…

As we prepare to embark upon our greatest “Dance in the Rain” adventure yet I can’t help but think about the timing.  God’s timing is always better than ours, I just wish it was easier to recognize.

Jadon is heading to Walt Disney World and the plans have been in the works for over two years.  The first time we spoke to Make A Wish Foundation was early 2012 and the plan was for them to grant his wish in September of that year.  Spring of 2012 still stands as the darkest part of this SMA storm… so far.  Jadon was very unstable and had major episodes on a regular basis with 10 of them nearly ending our journey.  We were scared and confused and “knew” we didn’t have much time.

When Make A Wish granted Jadon the wish of his dreams we struggled to figure out what that wish would be.  Our only criteria was that it would make his eyes light up.  We looked for things that would not require us to travel as we were truly scared to leave the comfort of our medical strong hold we call home.  Everything we came up with just didn’t seem right and we kept coming back to the magic of Disney World.  Jadon loves so many of the characters.

We communicate with Jadon through his eyes.  Closing his eyes means “No” and looking up means “Yes”.  It isn’t a perfect system when he doesn’t feel like participating but there is always the tell tale sign of the “Happy Belly”.  When his belly starts bouncing with excitement there is no question of his approval.  When we asked him if he wanted to go see the “real” Woody and Buzz Lightyear he nearly bounced himself right out of his chair.

So here we go.

We are loading up the Family Truckster and heading cross country, but instead of the Family Truckster we are doing it Cousin Eddie style…in an RV.  Make A Wish has rented an RV for us to travel in.  The advantage of traveling by RV is that there will not be the need to unload the vehicle and take all of Jadon’s equipment into a hotel room.  When we pull into our site at night everything will already be set up for treatments.  It seems like a great plan.

Once we get to Florida we will be staying at a “Storybook resort…where children with life-threatening illnesses and their families are treated to week long, cost-free fantasy vacations.”  This amazing place is called Give Kids the World.  It appears it may be a struggle to drag ourselves away from the resort in order to visit the theme parks.  This place looks awesome.

The excitement is really building now and we can feel the magic surrounding us.  Jadon’s Wish Granters and several friends came over the other night to wish him a safe and exciting trip.  That was the night we really, really started to get excited.  I truly wish we could say we weren’t nervous but that would be a lie, in fact we’re shittin’ bricks.  See how nervous I am…I know I shouldn’t use language like that and I apologize…we’re shittin’ rocks.

However, there are a whole lot less rocks than there would have been two years ago.  We didn’t know if Jadon would make it to the fall of 2012 and the trip was postponed so Jadon could have Tracheostomy surgery.  He would not have been recovered in time for the trip and therefore it was cancelled.  He is more than recovered now and he is truly thriving.  Life is better now than it was that crazy dark spring 2 years ago.  We see now, what we thought was being lost was actually simply being reworked, redirected, and made a whole lot better.

Please pray for us.  Please pray for safe travels and that Jadon will have the time of his life.

Stupid Elf Made Me Cry

Stupid Elf Made Me Cry

We always try and do as much as we can to find fun things Jadon can do.  We  “Dance in the Rain” of this life storm called SMA as much as possible.  This year was our first year for a Christmas tradition of “Elf on a Shelf.”

For those who are not familiar, the elf arrives and you must give it a name which in turn gives the elf its magic.  The elf’s job is to observe the kids, fly to the North Pole each night and report their behavior to Santa.  The elf comes back from his northern excursion and typically gets into some sort of mischief during the night.  Each morning he will be in a different place within the house and the kids have to wake up and find him.

After going through several names, Jadon decided he wanted to name our elf Eddie and he got so excited every time we set out each morning to find him.

On Christmas Eve all the elves all return to the North Pole with Santa, so the day before Jadon decided we needed to make something special for Eddie to play with on his last night here.  We settled on a hang glider.

Jadon was VERY excited to see him hanging from the ceiling fan the next morning, he kept checking on him throughout the day.  At bed time we hung Eddie and the glider on Jadon’s bed (we were careful not to touch him.  If you touch the elf they lose their magic.)

Christmas day I excitedly pointed out to Jadon that Eddie had gone but he left a note.  Eddie said that Jadon was such a good boy but Jadon was visibly upset. I could tell he wanted to see Eddie not a note from him.

I began to explain that Eddie was in a much better place.  The North Pole is great for Eddie because he can fly around all day (instead of just at night), play with his friends and just simply hang out with Santa.  I told Jadon he would see him again next year which of course to a 4 year old is like a lifetime.

Somewhere in the midst of my little speech I realized what I was saying to my terminally ill child.  I realized I was using the words I dread to hear.  The words that will likely be used to comfort our family when THAT dreaded day arrives.  I believe that when Jadon is called home by the Almighty he will truly be in a better place, he will be free from SMA, he will get to celebrate each day with God, and one day we will all be reunited in heaven.

I quickly realized that while I believe these words to be true in relation to real life (not a little elf and Santa) they will likely do little to comfort the pain of loss when that horrible day comes.

My mind quickly shifted to all the families who have already lost their angels.  Those families waking up on Christmas morning wishing they had just one more Christmas with their precious child.  With tears in my eyes and Jadon looking at me like I was insane, we said a prayer for those families.  We prayed for their comfort and understanding.  We prayed that they would find laughter in the day while still remembering and missing their angels.

Jadon seemed to get it.  He seriously seemed to understand as I wiped the tears away and proceeded to get him out of bed and ready for his treatments.  I talked to him about how we would have the best Christmas day ever, how we would do so to honor all those angels.  We have no control over tomorrow but we can choose to enjoy each day.

Jadon had the best day.  His oxygen saturation was 100% the entire day, his eyes sparkled, and was “singing” all day.  I think he was singing for the angels.

90% of kids with SMA Type 1 don’t live to celebrate their 2^nd birthday on earth.  Jadon was exactly 54 months old (4 1/2 years) on Christmas day.  Every day he beats the odds those odds worsen.  We don’t care what the statistics say because Jadon is with us now and WE WILL DANCE.

Eddie messing with the Toy Story crew

Looks like they caught him the next night.

Making friends…all is good

Never pick a snowball fight with a snowman.

Hoping everyone had an incredible Christmas.

SMA Awareness- The Ella Hunt Story

Despite the fact that SMA is the #1 genetic killer of kids under two years old most people have never heard of it.  Even doctors in major hospitals are extremely uneducated about the disease.  This is a story that exemplifies why SMA awareness needs to be spread. Ella Hunt came into the world on August 2^nd 2011 and was welcomed by her parents Erica and Dan as well as her two very active brothers, Noah and Carter.  When she was just 4 months old she presented as “significantly delayed” and the tests began.  The Hunts were given their beautiful daughters devastating diagnosis of SMA Type1, the most severe, on December 20^, 2011. Erica writing about that day:

“Picture this moment, I (mom) sit in a dark hospital room at 4 am waiting for the clock to tick as this is the day we are running tests to determine what is wrong with our precious baby girl. I had heard the letters SMA mentioned by both the Developmental Pediatrician and the Neurologist. I had also been warned NOT to google anything by the doc’s. By 4 am I couldn’t stand it. I googled it and there it was……

SMA, a fatal illness with life expectancy of less than two years. A disease that limits kiddos from having (any) muscle movement, a swallow or respiratory function. I was heartbroken and with momma’s intuition I knew this was it.

Less than 6 hours later, my worst fears were confirmed. Only it was worse news than we thought. Upon diagnosis, we were told we had weeks to months left with her. ‘Go home and hold her.

‘She is going to die in your arms or in her sleep’ the doctors told us.

I vowed then to never put her down until that time came. We cried out in agony realizing this gift of life would be taken home way too soon.The hospital sent us home (a 3 hour drive) and had us immediately placed on Hospice. All her physical therapy services were cancelled and little to our knowledge at the time, Ella was also discharged as a patient (not just discharged from the hospital).

THERE WAS NO HOPE.

We were encouraged to sign a DNR (Do Not Resuscitate) form which neither Dan nor I could get ourselves to do. Looking back, it was a whisper from God telling us there is more to this story and it is not over yet.”

Thankfully Erica and Dan heard that whisper as their prayer for more time was about to be answered.  A few states away a stranger, another SMA mom, was about to learn about Ella’s story.  Sarah, proud mother of two boys and a daughter Stella (SMA Type1), received a message from a friend in California about a blog she had come across.  Because Sarah actively spreads awareness her friend knew she would want to read about this little girl in Illinois.  A woman was making purses from Ella’s dresses and wrote a blog about it.  Sarah contacted the woman and asked if it would be ok for her to speak to Ella’s mother.

Sarah’s fateful phone call to the Hunts came one day before their scheduled meeting with the funeral home, which was the 8^th of January.  Ella’s celebration of life was scheduled for the 15^th of January.  They wanted family and friends to celebrate her life while she was still with them although they had accepted that the funeral would follow shortly after. Erica refers to this incredible SMA ambassador, Sara Turnbull, as their personal angel.  She introduced them to her daughter Stella. Her (then) 5 year old SMA Type1 daughter.  5 Years old? She explained that there are options in care that can give a family more time.  Time is what the Hunt family was after so they listened intently to the information the doctors had failed to mention.  Sarah described a life that would not be easy, a life with lots of machines, but a happy life.  A life with potentially years, instead of only months with their daughter.  While there are no guarantees with anything, they wanted to try.  Sarah suggested they contact Dr. Schroth (SMA specialist) in Madison WI.  Sweet Stella proved to the Hunt family…

THERE IS HOPE

Erica writes about the days after that phone call:

“We called Madison directly the next day. Instead of planning a funeral we began planning her life. Instead of planning on her dying, we began to plan on her living. We made the trip to Wisconsin two weeks later and left shocked. Dr Schroth did not give us choices like IF you choose this, it was more like ‘so, you are here, and if you want more time, this is what we need to do.’  We left armed with resources and most importantly hope and a vision for her life.

On the second day of this SMA awareness month (August) Ella turned 2 years old.  A huge milestone for all SMA families.  Not only is she surviving but she is striving.  She has some speech, a huge smile, and an active lifestyle with lots and lots of “Dancing in the Rain”. So why do we need to spread SMA awareness?

Because families wanting more time should know ALL of the options.

Look at this smile.

CLICK HERE FOR VIDEO

SMA Awareness – Care Decisions (Type1)

Picture courtesy of SMA Awareness Ribbon

An SMA Type 1 diagnosis is devastating to say the least.  The doctor comes in and tells the parents their beautiful baby, the light of their life, the life they had so much hope for is going to be cut short.  It is hard enough to learn there is something, anything wrong with their precious angel but to find out something like an SMA prognosis is simply earth shattering.

THEN…These devastated parents are asked to make decisions no parent should ever have to make.  They are asked how much care they want to give their child.   They may even be told that there is no hope.  They may not be given any options at all.  They may be told to go home and simply enjoy the little time they have.  Others may be told the only way they will leave the hospital is to have a tracheotomy and not even be offered other options.

That is why awareness so very important.  

There are basically 3 options of care for an SMA Type 1 child:

*Palliative Care – Also called comfort care.  The child is kept comfortable with the use of oxygen and pain relieving medications until the time they receive their wings.

*NIV (Non InVasive) Respiratory Care – A Bi-pap machine is used to assist the child in breathing.  Several other machines are also used in conjunction with NIV:  Cough Assist, pulse-ox, feeding pump among others.

*Tracheotomy – Instead of a Bi-pap mask, a ventilator helps the child breathe through a tube attached to a hole in their throat tube which provides a direct path to the airway.  Most of the same machines are used as in NIV.

There are NO guarantees with any of the care levels.  Each and every child is different.  Parents need to be told that there are options.  They need to be filled with hope, not fear.  The fear will be there, it is inevitable.  We have lived with that fear every single day for the last 4 years. But because of all those great moments in between, the giggles and the milestones, we think more of life than we do of death.

Judging a situation is always easier the further away you stand.  Some would say that a parent choosing to do nothing doesn’t love their child or a parent choosing a trach is holding on too long.  Neither could be further from the truth.  The devastation that SMA forces on a family is harsh, no matter the length of life and no matter the decisions that are made.

Each family must choose what is right for THEIR family and THEIR child.  There were so many times I wished someone would have told us what was right for us.  We simply prayed for those direction and looked into Jadon’s eyes for answers.  We firmly believe the path we have walked was intended for US and JADON.

We would never dream of judging anyone’s decision, we don’t have the right and we certainly don’t have the authority.  What we want is for every family to know ALL of the choices for their newly diagnosed child.  Some doctors are uneducated in the disease and give no options and no hope.  Others may even know the options but decide on their own what is “right” for the family.  In their mind there is no quality of life for a child who cannot move a muscle.  Even medical professionals don’t have that authority.

So this is why we spread awareness, because knowledge is power.  If a family has all the information and decides that palliative care is right for them, we want to stand by them and help them “Dance in the Rain” through their shorter storm.

There are too many stories of families who were never given the options but wish they had been.  Sometimes, just sometimes, because SMA awareness is being spread, a family simply looking for more time with their beautiful daughter will receive a call.  A call from a complete stranger, an SMA Mom, who is the answer to their prayers…be sure to check out our blog tomorrow (Saturday) for this exact story.

Milestones

A year can be measured several ways.  12 months. 52 weeks. 365 days.  But to us, we measure a year one day at time.

Yesterday marked the one year anniversary of Bug’s trach surgery.  The reasons that led to our decision for Jadon’s trach were burned so vividly in our minds.  The extreme respiratory distress episodes that resulted in single digit oxygen and heart rate readings – and more times than we care to remember, no reading at all.  But Jadon always bounced back, so we knew he had a lot of fight in him and we would happily go as many rounds as he wanted – no matter what the odds.  And with Jadon’s baby sister due to make her appearance in December 2012, it was extremely important to us that he get to meet her and she meet him.

That morning I walked down the hallway into the OR with Jadon telling him how proud I was of him and that everything was going to be great.  That last piece was more of a pep-talk to myself –  to trust that everything would be okay.  Surgery is risky for anyone, but for an SMA kiddo, the stakes are heightened.  The next couple of hours Tony and I paced around the hospital room until we finally got the page – Surgery was done.  Jadon did great and they would bring him to his room in a little bit.  When they brought Jadon in, streams of doctors and nurses piled in but I didn’t really see them.  The ENT surgeon began telling us about the surgery, but I struggled to focus on his words.  My eyes were just fixated on Jadon’s face and I kept thinking over and over how handsome our little guy was.  I didn’t notice the tube now attached to his throat or see all the equipment surrounding his bed.  All I saw was him.  The remainder of the day was a blur, but I distinctively remember sitting by Jadon’s bedside holding his hand and starring into his face.  Running my fingers across his forehead, cheeks, bridge of his nose and thinking how insanely good it was to see his little face completely mask-free.   Up until that morning, Bug had a bi-pap mask on more hours during the day than off.    And to wake up the next day and be able to give him kisses without dodging the mask was absolute pure joy.

The next couple of weeks in Madison and even the weeks that followed after returning home we continued to learn more and more about his trach, but never once did we regret our decision.  Knowing that Jadon had a more stable airway was comforting to us and allowed us to “breath” just a little easier too.  Because of the severity of his episodes, we are quite certain that without the trach we would not have gotten to experience the amazing milestones of this past year with Jadon:

• First Day of School
  

  FIRST DAY OF SCHOOL!!!!

• Welcoming Gracyn into our family
  

  Big Brother

• Skyping into school
  

  Skyping

• BUG Run (all the media appearances)
  

  BUG RUN 2013

• Bad News Bears
  

  Happy Birthday after rounding the bases

• 4th Birthday
  

  Birthday Party

Yes, a year can be measured several ways, but we will continue to measure them one blessed day at a time and all the while, dance in the rain.

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

 

 

 

 

Celebration – 4 Year Old Style

While Jadon’s official Birthday Party is not until Sunday the 30th it was important for us to celebrate the day he was born, get out of the house and “Dance in the Rain.”

From the looks of it, we would literally be dancing in the rain.  The morning of June 25, 2013 started off extremely rainy and we wondered how this celebration would go.  The plan was to visit Union Station and Crown Center in the morning, come home to let him rest and then head out for his baseball game later that night… and of course make it a special day for him.  To quote an 80’s icon, “I love it when a plan comes together”.

Let’s get this party STARTED!!!!

At Union station and Crown Center we found trains, pirates, custard, and a waterfall.

“AAaaaarrrrgh”

“Indoor waterfall?”

“That is one tall ceiling.”

“My Daddy helped make this giant cone.”

“While I was sleeping, ALL these presents just SHOWED up!”

Jadon took a REALLY long nap….so long we wondered if we would make it to the game on time.  As soon as he woke up, we hustled through treatments, got his uniform on and raced out the door.  We never cease to be amazed by the wonderful outpouring of generosity and inclusion the team and team parents have shown Jadon – and last night was no exception!  We love kids helping kids and when the boys brought their cards over to give to Jadon we nearly lost it.  When they lined up and ran by Jadon for the postgame tradition of saying “Good Game” there may have been a little water in the corner of the eye.  When Jadon “ran” the bases our gratitude started to run down our faces.  To hear his teammates and the crowd cheering him on – oh my!  To top that off, the opposing team came BACK into the duguout to cheer him on – be still our hearts.  As Jadon crossed home plate, the boys met him there with a “wave” and proceeded to sing happy birthday to him, well as you can imagine, it was all over at that point.
(BE SURE TO CHECK OUT THE VIDEO AT THE BOTTOM)

BUT wait, there was more!  We opened his gift from the team and found Jadon’s own personalized baseball cards and a signed baseball.

AND THEN we came home to find a GIANT balloon bouquet on our front porch with the biggest 4 balloon we have ever seen.

WOW what a night – the perfect ending to an amazingly, awesome birthday celebration….4 year old style!

Video from the game.

Fun with Chicken

Wednesday night the Chick-fil-A in Olathe hosted a small fundraiser for Rolling Ridge Elementary benefiting Jadon’s Hope Foundation.  Well… small is what we thought it might be.  We are quickly learning that with these amazing new friends from Rolling Ridge – nothing is small!

Because of cold and flu season we are still not taking The BUG out of doors.  However, his amazing teacher took a laptop and we Skyped in (that’s Ms. Lentz holding Jadon in the pictures below.)  Jadon could see and hear the events at the restaurant and watch the contestants compete in the chicken eating contest and frozen t-shirt contest.  Skyping also meant that everyone could come over and say hi to Jadon.  Needless to say he was incredibly excited and soaking up the moment!

That’s The BUG on the computer screen, right in the middle of the action

When someone would come up and say “Hi”, Jadon became through the roof excited and began vocalizing louder than we have heard since his trach surgery in July.  For the past month, Jadon hasn’t made any sound and only recently started vocalizing again.  Parents, I know it may sound inviting to have your child be silent, but trust me, complete, not a sound silent is no fun at all.  When his classmates would come on the screen, Jadon would get really loud and he had a great time cheering on the contestant participants.  Mad props go out to Rashaud Johnson for winning the nugget eating contest and to Michelle Williams for winning the frozen t-shirt contest.

It was very emotional to see such a large turnout.  Kristin said she got  misty eyed walking in seeing how many cars were in the parking lot and going through the drive-through and seeing the number of people in the restaurant.  She said every table was occupied and people were even standing up- overwhelming for sure!!  And to see all the kids there – wow!  There is nothing better than kids helping kids.

We won’t know the total donation from the night for a couple more days but there was $150 in the donation bucket alone.  One of the cashiers said it was a very good night.  We will have to wait and see, but I think it is safe to say that SMA awareness was spread and money was raised to increase the fight.  Thank you, thank you , thank you.

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!!!