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.

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.

A Lesson in the Woodshop

First of all it must be accepted that this box is beautiful in its final state.  Some may look at this and not like it all, and those people are …stupid.  HA! Just kidding.  There are lots of tastes and styles but this box is pretty much me, rough around the edges and not conforming to natural standards (maybe “dumb as a fence post” as well?).

This wood came from Europe where it was made into crates to carry extravagant metal and glass cases worth more than a couple hundred thousand dollars.  The cases are on display in the National World War I Museum here in Kansas City.  I helped installed those cases and the crates were destined for the dumpster.  I couldn’t stand the thought of all that wood heading to the landfill and had to save what I could.

“The stone the builders rejected has become the capstone” Psalms 118:22

The wood is beat up, distressed, and “damaged”.  What I see is character.  One of the pieces was very special and measured over 16” wide.  I have spent 5 years trying to figure out what to make out of it.  Just last week I decided on the incredible masterpiece I would create.  My plans were detailed and my dreams were extensive.

I cut the board to length…

It started to crack…

It continued to crack.

I stood and watched the crack spread the entire length of the board.  In the amount of time it takes to say “Spinal Muscular Atrophy” my masterpiece was ruined, the plans I had were over, my dreams for that perfect piece were destroyed.

I said “Golly gee, darn it” and ever so gently LAUNCHED my tape measure across the garage and as it exploded against the wall I simply walked away.  All that time dreaming of exactly what this piece would become was wasted.

When my jets had cooled I lifted the lid to the dumpster and went to send the wood to its apparent destiny.  When I picked up the dysfunctional piece I noticed, not the imperfections, but rather the beauty of the grain and the uniqueness of the shape.  These were things that would not have been noticed if I hadn’t taken the time to look closely.  It now couldn’t be what I had wanted, but I went to work cutting, sanding, gluing, and staining.

This wood has a story, it has twice overcome being thrown out and discarded.   It is not what I had envisioned, it is not what I had planned, and it is not what I would have asked for, but somehow, in many ways…

It is way, way better!

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.