Our next item on our plan was to get Zoey a 3 day EEG. We were hoping to get some answers about if Zoey still suffered with infantile spasms or not. We also wanted to know if her seizures were happening all over like we thought they were or if they were focalized in one spot. And also what type of seizures she was having (tonic,clinic, or mixture). After 3 days of fighting and lack of sleep we took those wires off and waited for results... Or lack there of... Even though Zoey had probably 50-70 seizures in those 3 days the EEG didn't catch any of them. She showed a type of brainwave that only kids with epilepsy have in between the seizures but didn't catch the actual seizure. So what do we know? Not much more. The only answer we received from doing the EEG was that she doesn't have infantile spasms which is great but I was hoping for more information. 
After that disappointing information I dug around and found a video of a little boy that looks a lot like Zoeys type of seizures called myoclonic seizures. I sent that info to the neurologist and she says that if Zoey looks like that, then she must have myoclonic seizures. As much as I love doctors and do believe they do a lot of good, this would be the 2nd time me or my family has diagnosed my daughter with a huge diagnosis. So what to do now? I have no idea! I cannot afford medications that could help my daughter and am on a list waiting for a trial of cannabis oil. I don't know what else to try for her medication... Anyone else know how to get proper medicinal cannabis oil legally to Utah??? In the mean time Zoey still has seizures!! As you can tell I'm kind of a confused and mad mess. I'm hopeful to get her into an occupational therapist finally and see if we can help her with her sensory issues(biting herself, rocking) and we also think she may have motor stereotype which she may or may not grow out of, but doesn't really affect her too bad. When she gets happy,excited or frustrated she flaps her hands in the air and makes a panting noise. Again isn't a problem, but explains some of the things she does:) through all of this torture, she remains a happy and excited girl! Loves people and also to tell you "no". She is happiest when you sing songs and dance with her! 
Finally, I wanted to send out a huge thank you to those who helped us out with donations, items, and support for the children and the earth fundraiser! We did great and I wanted to let you know what we are doing with those items. We are on a list to receive a special watch that Zoey will wear and it will send messages to us when she is having a seizure. Most of the time I am close enough that I know when she is having one or not, but night times make me nervous. She doesn't make noise and they don't last long that I would hate for her to have a big one and I wouldn't know about it. Also with the amount of testing she has done we have quite the big medical bill up at primary's and the rest will all be going to that! I just wanted to tell you all I know how hard it is to give up money because we can always use it elsewhere, but I really do appreciate it and will be grateful for the kindness of family and friends for the rest of our lives. We have been so lucky to be part of children and the earth, they do such great things for kids who don't normally get to do them. Thank you!!
