Update on Aurora

Hey everyone. So we are still here in Boston. On day 4. My neck hurts so bad from having to sleep on a tiny cot with Wesley and I am ABSOLUTELY miserable, I CANNOT WAIT to get my kids home! So if I am that miserable, you can imagine how Aurora is! She is still on the leads, they have captured 1 seizure so far, and want at least 2 more. I am starting to think we will be here all week, which sucks! She looks and feels like crap! Poor kid! She kept saying last night: "I want to go home, where is the car?" "I love you mommy, I am sorry for this""Its all my fault, this is all my fault!" While she hysterically cried. When I told her that this wasnt her fault and that it was OK... and that we loved her so much, she just cried and hugged me and and said "I love you mommy!" SO DAMN SAD! This is horrible. We are here to figure this all out, but my Aurora is feeling upset and thinking she did something wrong. It breaks my heart! She asked me why Wesley didnt need his special hat, or have seizures! Epilepsy is so much more than the seizures, not only do we have to deal with the seizures, but trying to make Aurora understand she did NOTHING wrong, and that its ok... and try to explain to her why Wesley doesnt have to wear a hat or do what she is doing right now!This sucks! I cried a little bit yesterday because I had gotten the news that the night before when WHAT WE THOUGHT was Aurora's typical seizures (and had 9 of them) those were not showing up at seizures on the EEG. They said that they could be MINI seizures or Aura's that she is getting, because she had 9 of them and then she had a 3 minute long seizure. I WAS STARTLED when I watched the video with the doctors to find out that when she did have the seizure they captured on video that I WAS LOOKING RIGHT AT HER, and didnt even have a clue. It was so subtle. She cranked her head over, eyes kind of fixated, and then she turned rubbed her nose, and then eye... and then did something weird with her mouth which was so hard to notice because she had her paci in, and she was laying down trying to sleep.. and can I say this was at 4am! I felt so guilty that I had been LOOKING RIGHT AT HER and had no clue. Plus I was by myself here that night with both the kids, and I was exhausted and barely could keep my eyes open! I want to hurry and get this over with, and get my Aurora Bug home.... This has been a nightmare! And now that we learned what these new seizures look like, I feel sick to my stomach, thinking "HOW WILL I KNOW?" I am going to be that mom FREAK who questions every time she rubs her eyes or nose???? THIS SUCKS SUCKS SUCKS! Awwwwwwwwwww. Anyways, it feels good to write this all out!