One year full of seizures!

I described the first morning I woke up to Avri having a seizure. It was one of the scariest most helpless feelings as a mother. Little did I know that I was in for a very ruff ride. That morning was just the beginning of one of the hardest years I would live so far in my life. I have talked about all the struggles through this year with doctors not listening and all the medications we tried that failed. I have not gone into the seizure detail of the story yet. In my mind it is a long and very detailed story full of fear, anger, pain and much helplessness among many the things. As far as words and sharing this part of the story I can't explain or describe a lot of it.
So Avri had her first seizure after that first one they just kept coming. I can recall 3 more full grandmal seizures that we could not stop. Avri had gone into a neurologist and had all the EEG studies done. She had tried every single seizure medication available. We finally settled on one called lamictal. It had the least amount of side effects for her. We also had a nose spray that we kept on hand so if she ever went into a grandmall seizure we could administer this strong medication and try and stop the seizure. So Every time Avri had a seizure that lasted more than 5 minutes we were to call the ambulance. All four times the ambulance was called to our house it was around 6am. I have never considered myself a light sleeper but some how all those mornings I awoke to the change in Avri's breathing. I always like to imagine that I have this co-parenting angel with me for times like that. I have no other explanations for waking up. I have laid in bed many nights listening for my kids, just to see if I can hear them breath when I am trying to. Avri often said she had a dream about angels being in the corner of her room watching her. Some times I wonder if it is not a dream at all. It is hard to think of those mornings and wonder what would have happened if I did not wake up.
I remember this day like it happened yesterday. It was about 3pm. I was sitting on the couch and I must have been exhausted because I fell asleep, something I could not do if I tried. Avri wondered outside. I woke up to my neighbor knocking on my door. She said to me" Avri is wondering around out here in a complete daze" " I tried to talk to her but she won't respond to me". I ran outside. It was one of the nicest days we had had in a long time. Avri was standing across the street next to the neighbors car. She was rubbing her fingers together and had a slight bounce to her. She seemed 100% focused on her hands. I said her name and she did not hear me. I put my arm around her and slowly began guiding her towards the house. Her fingers never stopped rubbing and even though she was slowly walking in the direction I was taking her she still had the bounce to her body. I had this intense fear welling up in me. I remember thinking to myself she is fighting off a seizure. I was able to steer her up our front steps. I was talking so softly to her and being so gentle as if one loud sound or wrong touch would break her concentration and her mind would give into the misfires. I said "this is your last step one more step and you will be back in the house" She obeyed as if she were in a robotic mode. One foot in the door and it was as if she knew she were safe the moment her second foot came down the rest of her body relaxed and gave into the horrible mental fight she had been fighting. I don't know what felt so different that day, but I did not time this one. The second she went down I told the neighbor to call 911. When the ambulance arrived Avri was still in the same spot still in full grandmal seizure. The EMTs moved her to the middle of my living room floor where they worked on her. They put oxygen on her and where taking her stats. With in five minutes of them being at my house they said they were taking her to the American fork hospital. I usually drove my car and followed behind the ambulance but this time the EMT offered for me to hop in the front and ride with her. We were only about 2 miles from the house when I heard the EMTS in the back talking about getting an IV going. They seemed to be having a hard time getting on in because she was still in full seizure mode. I remember hearing "she has blood coming out of her mouth" and then a reply "she bit her tongue" It seems like it took a life time to get to the American fork hospital. Although it was probley my fastest ride to that location ever it felt like the slowest. I could have got out and ran along side the ambulance and still beat them.
Avri was wheeled into a room where there was a team of doctors waiting for her. The EMTS were never able to get the IV in so that was the first thing. Then the medications started. Avri was being shot up with every seizure medication possible to stop her seizure. Nothing worked. I found that if I gently rubbed Avri's cheek and repeated that I loved her and to come back to me over and over she eventually did. On this particular day no amount of touching her cheek and begging her to to come back helped. I was standing over her kissing her and whispering in her ear when all the sudden a doctor grabbed me by the shoulders and swiftly but gentle pushed me out into the hall. He said it was time for me to step out. They would come get me when she was stable. I had so many questions "what had just happened?" He was gone before I got a sound out. I think I just stood in the very place he left me. It seemed as though time had froze and the world had gone quiet and I was standing right here , the only place In the world. I was still just standing there when a nurse or someone came out and said "Avri has stopped breathing on her own" ." We have put her on a ventilator and called life flight" "She will be going to Primary children's hospital, it is my understanding you rode with the ambulance" "You will need to find a ride and you may want to leave now" I asked if I could at least go in and see her before they took her and she said" "no she is not stable and as soon as we have word that life flight is near we are going to paralyze her with an IV drug for transport" She said "The best thing you can do right now is hold it together and find a ride"
Once again dead silence. I turned and walked to the phone. I called Matt and he was not within a reasonable distance to come get me. I called my sister she was not able to come and get me. I called my mom at work and although she lived in Payson a good 45 minutes away she said she was coming. My dad must have been home from work and my mom had just got off work. 2 hours had already gone by since this whole ordeal started. Avri had been in full grandmal seizure for 2 hours at this point. I remember hearing the helicopter come and go. I do not remember anything else in-between that. I could not tell you how I got out to my dads truck or a thing about the drive to Primary children's hospital. I do know that at some point later on my dad bragged about how fast he drove to get there and my mom saying how impressed she was with him because he normally follows the speed limit no matter the hurry.
I will continue this story in another post.