An Update on Weston 💙

Our recent trip to Vanderbilt went well, and we left feeling thankful for a neurologist who took so much time explaining Weston’s brain abnormalities, his epilepsy, and the why behind so much of what we see. Some of it was difficult to hear, but having a better understanding brought some much-needed clarity.

Because of how abnormally Weston’s brain developed, he has an increased susceptibility to seizures. We also learned that some of his nighttime episodes could be a combination of seizures and dystonia (involuntary muscle movements that can resemble seizures). Our next step is a 24-hour hospital EEG to establish a new baseline and hopefully better understand what is happening while he sleeps.

We received more direction regarding his current medication and now have a rescue medication for prolonged seizure clusters. We also discussed future options, including a medically supervised ketogenic diet for epilepsy if his seizures become difficult to control, along with continued conversations about feeding challenges and aspiration risks.

We have another genetics appointment coming up this Thursday, where we are exploring additional testing and possibly uncover more pieces of the puzzle surrounding Weston’s brain development. We would appreciate prayers for this appointment! 

We are also prayerfully considering transitioning more of his care to Vanderbilt, where a coordinated team of specialists could work together to manage his complex medical needs. The travel would be challenging for our family, but having that level of collaboration would be such a blessing and so helpful. 

There is still so much we don’t know, but we are thankful for physicians willing to dig deeper and help us better understand our boy. We continue to pray for wisdom, clearer answers, and direction as we navigate each decision.

Even when we don’t understand all the whys, we rest in knowing the Lord knows every detail of Weston. 💙