Clinic Days and Coach to Cure

Last week we headed back to Denver for a cardiology follow up (definitely not our normal) and muscle clinic day. Cardiology was to follow up after Cade’s cardiac MRI in March showed a mild decline in function. We needed a better understanding of if this was the beginnings of congestive heart failure or if it had more to do with it being 4 years since his last MRI and he had grown significantly in that time.

We are were pretty nervous about this appointment. But we got great news that his echocardiogram from March of 2023 was nearly the same as the one from this visit! No beginning stages of congestive heart failure!! We also came out of this appointment with a better plan to have a baseline for better management of any future cardiac concerns. We will continue with yearly echocardiograms and we also are developing a baseline from the wearing of a holter monitor.

So on Thursday, we were all breathing a bit easier and decided to take a drive out of the city and go up the mountains to Evergreen. It’s a beautiful town! Bonus was seeing elk up close!

Then on Friday we had muscle clinic. We were not expecting any changes at this appointment since we felt that Cade was stable and all the providers agreed! We did decide to wait on starting Cade on a recently approved non-steroid medicine that would slow the progression of his disease. They had seen some cardiac irregularities in non-ambulatory patients and so required extra bloodwork and cardiac testing. Since we just got done with one cardiac scare, we decided to wait a little longer to see some more data on the non-ambulatory patients.

The providers all did their best to get us out of clinic quickly because we were heading home for the Swedes football game. It was also the High School Coach to Cure MD game and homecoming! We made it back in plenty of time and both the Swedes and the Sidney Red Raiders participated in Coach to Cure MD. Cade and the flag that was presented to him last year by Cozad Community Schools at the Coach to Cure MD game led the team onto the field!

Then if you looked on the sidelines, you could see the coaches wearing green wristbands.

The players were all given stickers to put on their helmets.

Two other area schools also participated. A huge thank you to Cozad Community Schools and Broken Bow Public Schools for their participation. Cade was watching game film and saw the wristbands! This is something we hope to carry on and hope more schools would be willing to join us.

Now it is back to a regular week and hopefully we can get a good routine going as harvest is starting!

Blessings. Lynnette