It was a very long day, but a successful one. Thank you to everyone that reached out to us today to tell us you were keeping us in your thoughts and prayers. Overall we learned enough to simultaneously give us hope and terrify us. I daresay that in the two hours we met with the good doctor we learned more than most doctors will ever know about ESES. Indeed, as Dr. Riviello pointed out -- this condition is so rare (it effects less than .2% of the patients presenting with childhood epilepsy) that it is often up to the parents to become the authority on their child's condition in order to care for them. Fortunately, that is a role I am already used to.
And it is a banner I will take up again in the morning. Right now, we are weary in every sense. Simon and Tigger have been tucked into bed and Brian and I are tucking into some sushi and a beer (or 2). We keep starting conversations about what we learned.. and then dropping them. We are still processing it all. We don't yet know what to think, much less what to say.
Rest assured, however, another post will follow soon. I will share what I know, what I have learned, and what our next steps will be. Thank you again for reading, and for opening your hearts to us. We feel the love and are using it to help us stay positive and focused on one step at a time. Our little man needs us all in top form.
|Tigger and Simon made their typical grand entrance to an adoring crowd at the NYU Epilepsy Center. They are rockstars... Brian and I are just part of the entourage.|
|As usual, we bribed Simon with a sandwich to get him to cooperate through the 2-hour-long appointment. Tuna on rye from an authentic NYC deli... what could be better than that?|