Our big girl Elsa is now 5. And my-oh-my, there is a lot going on in our world. Here are some updates across the board:

Seizure: After two years of being seizure free, our neurologist OK’d Elsa going off of her seizure med Depakene. We started weening off of it two months ago, and… so far, so good! No breakthrough activity to speak of at this point. (Knocking on wood, crossing fingers and toes, PRAYING!)

Vocalizations/Focus: Relatedly or un-relatedly, after dropping the seizure med, Elsa has be more verbal (not words, but vocalizations) and more focused. She’s napping a lot less (pros and cons!), and we’ve had a lot of friends and family report to us that she seems more checked in to all that’s going on around her.

Therapy: Our biggest day-to-day change is that we are no longer seeing therapists in our home. We are now taking Elsa into a pediatric clinical setting at a local rehabilitation hospital 2 to 3 times a week for therapy. It was really sad to say goodbye-for-now to our awesome Early Intervention team, which kept on with us privately after Elsa aged out. But Elsa seems to be benefitting from the change. This clinic has a lot of resources, and they are constantly evaluating what works, and what doesn’t. Right now we are in their pool once a week for PT, for instance, but that could easily change if it seems they think she would do better in a different setting for a few weeks. I love approach! We’re really pushing her.

Grip: Elsa has never liked to hold anything, and she’s never kept anything in her hands for more than a few seconds. That’s what makes this next report so amazing: Elsa this past week held onto the rope of a therapy swing for 14 minutes!!! Here’s a video to show you how she rocked it. At the time the video was taken, there were two therapists in the room: One ABA therapist, motivating Elsa with Frozen songs (ironically!) and one OT, assisting her with the swing.

We continue to take the simple approach of giving Elsa every advantage we can, to maximize her potential. We have no idea what the future will hold, but we never want to look back and wish we had done more. Here’s to year #5!




Leave a Reply

Your email address will not be published. Required fields are marked *