Adey's Army

I've been meaning to post something about this for a while. Adey's Army is the team we have created for the NW Epilepsy Walk on June 16th. Adey, one of our twins, has Myclonic Epilepsy and Febrile Seizures. Her first seizure, at just 6 months old, was the worst experience I have ever had- I can't imagine what she thought of it. She stopped breathing and became unresponsive for a significant period of time. Eventually she started breathing again on her own but remained unresponsive for the better part of 2 hours. There were 20 doctors in the ER with her, it was chaotic. All I could do is pray- dear God, please don't take her.  I said it over and over and over again.  We had hundreds of people across the United States praying for our little Adey.  She recovered and did not have another seizure until her next fever...until she was abotu 13 months old. We started to notice her body tensing up with a little hop in it. She would have a few and then they would stop. The doctors thought we were crazy. EEGs showed nothing (course she didn't have any seizures while hooked up to the 20 minute EEG).  When she was about 16 months old we took her to the ER when she was having clusters of them. The first time they sent us away, stating they didn't think they were seizures. The next day we went and literally demanded a video EEG that lasted longer than 20 minutes.  They heard us and found results consistent with Myclonic Epilepsy.  She started Keppra immediately. This medication helped the seizures but made her so, so very tired and loopy. We switched to Zonzomide (I'm not spelling that right) and she has been on that ever since with some dosage adjustments every few months.  Now we only see the Myclonic seizures when she has a fever with febrile seizures. We have been to the hospital a few more times. It's been quite the journey.  Doctors have also thrown around a diagnosis of Autism, but it's hard to say how much of her delays are related to her seizure disorder/meds  vs. something else. We have seen a genetic specialist who doesn't think she has any genetic issues going on (yippee).
Anyhow, we are trying to raise awareness (and money) to support the NW epilepsy foundation. We have purple wrist bands with Adey's Army inscribed on them. Suggested donation is $3-4. If you are interested please leave a comment and we will connect.

P.S This is my beautiful Adey...I don't have any pictures of her with her new glasses. Think she's cute now? She's like 700 x more cute with her glasses!