I’ve shared so much of Oakley’s journey with you all, and today I want to talk about something we’ve been dealing with recently. After his time in Liverpool, Oakley started having issues with CSF fluid buildup, which raised concerns.

The doctors initially thought he might have Hydrocephalus, a condition where excess cerebrospinal fluid builds up in the brain. This was a terrifying thought, especially since Hydrocephalus isn’t part of Apert Syndrome—it’s a completely different condition altogether.