These past two weeks has been a tough one. After a few seizure-free days, we thought we might be in the clear—only to be caught off guard by a large seizure Wednesday evening around 6 PM. These seizures aren’t just affecting Ava’s ability to speak; they’re completely impacting her tongue, making it impossible for her to swallow her secretions. The hour after a seizure is especially dangerous, as her swallow reflex doesn’t kick in right away, putting her at risk for choking. We have to be extremely careful with positioning to keep her safe. 

 

What makes this even more challenging is that Ava’s seizures are happening at unpredictable times. In the past, they’ve only occurred within the first 45 minutes of her falling asleep, but now they’re coming at all hours, making it even harder to anticipate and manage them. 

 

Because of this, we’ve made the decision to travel to Seattle Children’s Hospital to get a reading on her Vagus Nerve Stimulator (VNS). This is something that can only be done in person, and it will allow us to check that the device is working properly, has enough battery life, and is activating at the right times to catch these large seizures. There’s also a possibility that Ava’s VNS settings may need to be adjusted. If she’s going through a growth spurt, her body’s electrical activity could have changed, meaning the current output from the device may be too low to be effective. This is something we’ll be looking into during our visit. 

 

From there, we hope to make a game plan to get these seizures under control. As always, we’re so grateful for the support and encouragement from all of you. 

We’re determined to find answers and relief for Ava, and we appreciate everyone who continues to follow along on this journey with us.