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.

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!!!

What we want you to know about SMA

A friend of mine recently said to me “I know you want to build awareness for SMA, but what is it that you want people to know?”  I thought this was a VERY good question with a not so short answer, but here it is:

First – We want people to know the disease exists.  SMA = Spinal Muscular Atrophy.

– Most people have never heard of Spinal Muscular Atrophy, including medical professionals (We certainly had not).  We want everyone to have heard of the disease.  When I say “Spinal Muscular Atrophy” I want people to say “I’ve heard of that” rather than “Gesundheit” because they think I just sneezed.

To get people’s attention we must tell them how severe the disease is
– #1 Genetic killer of kids under 2
– 90% of the kids diagnosed with SMA Type 1 don’t live to see their second birthday

Second – HOPE ENDURES –

-Newly diagnosed families NEED to know that there are options of care that can extend the child’s life.  Despite the staggering statistics there are care options that can (not always) extend the life of even the most severe cases.  This care relies on the help from many machines and a specialized diet.  These options may not be right for every family but every family needs to know they exist.  Doctors definitely need to know these options exist. (Be sure to check out our Facebook page this month to see all the amazing kids “Dancing in the Rain”.  There are so many beating the statistics. )

Third – You can be tested to see if you are a carrier of the disease.

-1 in 40 people carry the gene that causes SMA.
– If you are considering having children it is advisable to be tested.  Knowledge is power.
– If anyone in your family is a carrier of SMA (even second or third cousins) your chances of being a carrier increase.  If you have a first cousin that is a carrier, your odds increase to 1 in 8. (I am a carrier so I hope my cousins are paying attention.)

Fourth – There is a lot of very promising research.

-There is so much that is scientifically known about SMA that we truly believe there will be a cure!!
-Gene Therapy is the most promising research right now and should be in human clinical trial in the first half of 2013.  This is very, very, exciting!!!!

 Fifth – Newborn Screening

– Newborns are tested for several diseases but SMA is not one of them.  It should be included.  It would be beneficial to know an SMA diagnosis as early as possible.  Once a cure is discovered this becomes even more critical.

So there it is (the “short” version).  Now go shout it from the mountain tops!

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.

The SMA Rollercoaster!!!

“Gitchee Gitchee Goo means I love you!”  The radio in the other room blasts the soundtrack to Phineas and Ferb (One of Bug’s favorite shows) while my beautiful wife bathes our amazing son who we call “The BUG”.  She sings along as she moves Jadon’s arms to the music.  I stand in the doorway with a shark shaped towel draped from my head waiting to catch a dripping wet boy when the fun time, I mean bath time, has ended.  This is definitely one of “those” moments.

Only now, standing in the doorway of the bathroom, does the magnitude of the events from Tuesday morning really hit me.  My eyes swell as I reflect.  Tuesday morning was not fun.  Had it gone only slightly different this bath time would not have been possible.

Jadon had his biggest “episode” to date.

 

Not going into the details of this nightmare I will just say that I was very scared our rollercoaster had derailed.  While the machines were productive and my actions were helpful I believe LOVE is what kept him here, and it’s what has kept him here all this time.  While I am not a trained medical professional I believe that the “pros” would have given up on our little warrior, which is something I refused to do.

After an insanely stressful morning, I changed my sweaty shirt (the shorts were surprisingly ok) and decided to take Jadon outside to enjoy the day.  While every ounce of my being wanted to simply sit comfortably inside, close to the machines, I was drawn to take him out.  He loved it.  The rest of the day was pretty good, Wednesday was even better, and today was nothing short of amazing.

Today Jadon was so happy and talkative that I didn’t want to lay him down for his nap.  I didn’t want that play time to end -ever.

Such is the “Rollercoaster of SMA”.

Recently we have been planning for Jadon to attend pre-school next fall.  We have also been planning some summer trips.  We are excited to be making plans for the future but are constantly reminded of the beast known as SMA residing in our lives.  We are constantly “getting past” the bad and simply enjoying every second of the good.  It is obvious that the destination of this ride is solely in the hands of God.

Our rollercoaster dips pretty low sometimes but the view from the height of this ride is so incredibly worth it.