February 26, 2017 – One year Anniversary from Epilepsy Diagnosis It’s been a full year since Reagan was officially diagnosed with Epilepsy. A year of so many tests; a year of so much heartache and hope, filled with seemingly unending tears, only stopped by pure strength, determination, and more support from the people in our … [Read more…]
A few lessons that we have learned over the past month: Lesson 1: Make sure Reagan is sent to school with spare food. I can’t exactly remember how we came to this conclusion, but I believe Reagan was so hungry one day at the beginning that she ate her snack with her lunch. Then, when … [Read more…]
January 9, 2017 – Start Keto Diet In the days leading up to our hospital admission, I thought, for some overprotective, parenting-inclusive reason, that it would be a good idea to explain to Reagan that we were going to have an overnight with the doctor, and that we were going to start eating “magical” food … [Read more…]
December 13, 2016 – Follow-up MRI and meeting with the Neuro-oncologist It seems that it has been over a year since we had received any good medical news. The typically optimistic people that we were at our core were slowly being replaced by more pessimistic, on edge, waiting for the next shoe to drop, type … [Read more…]
Schrodinger’s Cat – simultaneously alive and dead. Reagan’s beast – simultaneously doing nothing and growing. Simultaneously it is everything and nothing. We won’t know until tomorrow, when we peak at the beast for the second time. Tomorrow when, by us looking at the beast, we have sealed its fate as either doing nothing or growing. … [Read more…]
Our phones are never far from us. They are never on silent if Reagan isn’t with us. Even when Reagan is at daycare or with a relative, we are on call. There is always that call that she is having a large cluster of seizures and is not doing well. That she is stumbling around … [Read more…]
November 22, 2016 – Meeting with the Ketogenic doctors Today is the day. The day we have been waiting for as soon as it was apparent that the medications were not working. The day that we are hopeful will set us on a new path that could change everything for Reagan and give her a childhood … [Read more…]
Reagan has been on Zonisamide since May, slowly increasing the dose, 2 weeks at a time, for 12 weeks, to reach her current dose. She has been on Onfi since August 2016, slowly increasing the dose, 2 weeks at a time, for 10 weeks, to reach her current dose. Every time we increase a dose, … [Read more…]
Definition of Otto – lap dog, cuddle bug, playmate, writing partner, stuffed animal eater, new best friend, and releaser of deep, hidden emotions On October 15, 2016 Blake brought home the newest addition to our family, Otto. He is a beautiful, smart, amazing Pudelpointer. What is a Pudelpointer? It is a German bird dog that … [Read more…]
We had planned a trip to Mexico the week after Reagan’s EMU Study to celebrate the end of 9 months of intense Epilepsy testing. I don’t even want to go on the trip any more. It was to celebrate the END of testing. We are nowhere near the end. In fact, we are back at … [Read more…]