(Short on time? Read the underlines!)

We are thrilled to announce that after about 15 rejections by our insurance company, they FINALLY approved Manny’s main heart medication, THANK GOD! It’s been a fascinating first month of Manny being back at home…from returning to in-person classes and church, receiving an impromptu visit from our local firemen, to running for dear life – read on!

Although doing school in the hospital was somewhat doable, Manny was probably more thrilled than most kids to return to his in-person classes and church. We love his CC Tutor and his Algebra 2 teacher! Always a homeschool mom at heart, I relish discussing issues with Manny like why Lincoln regretted Lee turning down the President’s offer for Lee to lead the Union troops and how does this relate to statues being torn down today?  Or what is a tautology and why is it important to know how to accurately employ one to state truth? Meanwhile, after a much too long 2-month absence, Manny returned to his favorite role at Rooted – greeting drivers and passerby with a “You Are Loved!” sign on the street corner before church service (see photo on the homepage collage); he loves receiving their honk or hand wave! There truly is no substitute for person to person interaction in both an academically and spiritually-stimulating environment, and we thank God for each of you who have helped spur on Manny’s heart, soul, mind, and body, whether past or present!

Earlier this month, Gary decided to call the local Fire department to see if they could assist in changing the battery in a smoke alarm that was installed WAY too high for even our home ladder to reach. Little did we know that the truck would show up within the hour! We shared our ardent admiration and appreciation for all emergency service workers. I explained to them that 13 years ago, it was the local firemen in CA who showed up lickety-split to assess baby Manny when he suffered his first cardiac arrest. We were so happy to give out water bottles, granola bars, Ray Comfort “Million Dollar” notes, and pray for these courageous men. They in turn doffed Manny with a red plastic Jr. Firefigher’s hat!

In between attending classes, studying, managing 8 different meds and supplements 3 times a day, and practicing his brand new baritone ukulele, Manny has had several follow-up appointments back at Duke. HIs latest test was ordered after questioning how well his Zoll cardiac life vest has been working.  Since Manny can no longer be left alone in the event he experiences Sudden Cardiac Death (SCD), we have needed to quickly inform anyone who is with him (without one of his immediate family members around) what to do in the event of an emergency. We have had many false alarms! One day, his life vest siren went off after he ran from the stop sign at the end of our cul-de-sac to our house, a distance of only about 20 yards, yikes!  Thankfully, Manny felt okay and managed to deactivate the life vest before it could defibrillate him. Oddly enough, he also jumped on our trampoline for nearly an hour a few days prior and was absolutely fine, but two days after that he was huffing and puffing simply climbing one flight of stairs at home. So it’s become a day to day guessing game which activities tend to tire him out to the point of exhaustion and how much can his heart really handle? 

 (You can’t get any better than a Star Wars-themed pediatric echo room!)

With this in mind, his doctor ordered a cardiopulmonary stress test. Praise God, although it was extremely uncomfortable running on a treadmill hooked up to so much equipment and only being able to breathe through his mouth while his nostrils were completely pinched close, Manny managed to walk, then run at increasing speed and incline for nearly 8 minutes before calling it quits. This is a good sign and helped prove his life vest was most likely glitching at times due to not having much fleshy muscle to take more normal readings from, ie we need to fatten this kid up a little and make sure he warms up and cools down considerably before exercising! (Don’t worry – he’s been spoiled with steak and way too many other treats since coming home!) After 2 weeks in a row spending about 8 hours total back at Duke, we are all glad to hear he might not have to return for follow-up care for perhaps 3 more weeks.

We thank God for each and every one of you who has overwhelmed us with your generous and sacrificial giving to COTA for Manny. To know that 100% of these funds are now available to assist a LIFETIME of transplant-related expenses and YES, even funds raised above and beyond the fundraising goal – this is an incredible gift to behold. You have touched each of our hearts and we are forever grateful, especially MANNY! We will continue to keep you posted on his progress; please feel free to continue sharing COTAforManny.com and God’s amazing love!

Philippians 3:14 

I press on toward the goal for the prize of the upward call of God in Christ Jesus.