July 4th- not the updated we wanted

The last almost seven days have honestly been really good. After everything we’ve been through, it finally felt like we could exhale a little.

Then today reminded us just how quickly things can change.

Today also happens to be the 4th of July, and while it’s hard to fully celebrate with everything going on, we’re still happy and grateful to be together. All 4 of us.

Ryan and I stepped away from the hospital for a couple of hours, and while we were gone, everything shifted.

Colton is doing well. He’s playful, wants everyone’s attention, and continues to show us more of his personality every day. Watching him smile and interact has been such a bright spot.

Declan, on the other hand, decided to keep us on our toes. We started noticing unusual movements and changes in his facial expressions…from his eyebrows all the way down to his chin…and then it began affecting his arms as well. It didn’t feel right, so we reached out to the Nero team.

After evaluating him, we learned he was having seizures… again…. 😭😭

Watching your child have a seizure is something no parent should ever have to experience. It’s heartbreaking, terrifying, and leaves you feeling completely helpless. We don’t have all the answers yet. Right now, the team is watching him closely, gathering more information, and trying to determine what’s causing them. We’re hoping the next couple of days will provide some clarity and a plan moving forward.

Tonight, our hearts are heavy. Very HEAVY!!

We’re asking for time, for answers, and most of all, for prayers for our sweet Declan. Please pray that these seizures stop, that the doctors are able to identify the cause quickly, and that our little fighter finds comfort and healing.

We’ll share more when we know more. Right now, we’re just taking it one minute at a time.

Thank you