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.