This was such a fun nap time activity! What are some of your 2026 goals? 💞 #2026bingocard #2026goals #2026 #visionboard #newyearsresolution

FOLLOW-UP from the 24-hour Nap: The 24-hour Awake Time. As I said in the previous video, this happens between 4 and 5 times a month usually. The good thing about the awake Days is that she is normally in a really great mood to begin with and by the end of the 24-hour week, as anybody would be, she's kind of rough lol. This doesn't necessarily mean every child with CDKL5 will have this issue, this is just something we experience and I have talked to other parents that have experienced it as well.