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.
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
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.