“Therefore be imitators of God, as beloved children; and walk in love,just as Christ also loved you and gave Himself up for us, an offering and a sacrifice to God as a fragrant aroma.” Ephesians 5:1-2 NASB
We returned to Children’s Mercy this past week for Winston’s first clinic check-up in over a month. This was a new team of doctors and nurses, since he “graduated” from the CHAMPS program. We’ve met and worked with many of them during our time, so that helped make the transition easier. Also helping the move was the good report we received from the echo and the 12-lead. They are really happy with his progress since the Glenn surgery. We were hoping to get him off some of his meds, but at this point they are leaving them in place. However, the doctor did say if Winston doesn’t have any rhythm episodes before his first birthday, he will work to eliminate the 2 big ones then. We are also fortunate that his appointments have begun to spread out more! The next one is not until late December… and in Wichita! Children’s Mercy has recently opened a cardiac clinic there to serve heart families like ours, and cut down on some travel. They have worked hard to expand the services they offer in places like Wichita and Joplin. We were reluctant to leave the people and comfort zone we’ve developed at CM-KC, but Winston’s cardiologist will work a couple days a month in Wichita and we are excited to keep him and the care consistency he will provide! (We do have a neuro-development assessment in a couple weeks in KC. Their team will also support him however they can through to adulthood.)
At this appointment Winston also had a little photo-shoot… to coincide with the opening of this clinic in Wichita, CM marketing team asked to promo Winston’s story as a promo in the area. We feel blessed to have the opportunity to give back and help CM, as well as to reach out and pass on our experience to other heart families starting this journey.
Last Spring, CM also expressed an interest in featuring Winston’s journey in a docu-series they were working on. It is not something we shared with a lot of people initially, as we know every CM patient and family have stories worth telling. Neither Emily nor I were excited about the idea of being on camera, but for a number of reasons it became clear we were to do this.
First , we are extremely grateful for the CM team we worked with and want to help them however we can. As we’ve mentioned a lot in the blog or if you’ve talked to us in person for very long, you know that the Fetal Health and Heart Center are doing some amazing things. We felt we couldn’t turn down the opportunity to help promote their program and shed light on the work they are doing with the CHAMPS team, interstage app, and data analysis.
We benefited tremendously from families who went through this journey before us. They opened up and shared through music, a CM video online, over coffee, with notes, and phone conversations. We pray this will be one way we can encourage those who face the battle down the road. We’ve also always prayed that God would use Winston’s journey and ultimately we hope HE uses it to capture hearts along the way. And ultimately, our decision rested with not just being able to tell Winston about how his story began, what God has done in his life, and how He used him,… but someday getting to SHOW him a glimpse of it through this footage.
Inside Pediatrics doesn’t air until December, and only in the KC area for now, but they released a promo trailer on Tuesday. You don’t have to know any of the kids for it to capture your heart!