Wednesday, March 5, 2014

Stomach in knots.. The first of many to come

March 5/6th 2014
  As I lay here at 1:20 a.m. trying.. trying to go to sleep. I realize I can't. I wonder if Robbie is having the same problem in Aidens room? You see, today/ yesterday March 5 th, Aiden had a Neurologist appt. Just a regular 3 month check up. This one he got an EEG, which we knew he would have to get. He gets those every 6 months. He will also have to get bloodwork, as usual.
  Sitting there chatting with the Dr. about how well Aiden is doing and thinking all is well, but in the back of my mind, also thinking... It's been two years since Aidens last seizure.  The Dr looks up and says " well it's been two years since his last seizure, I would normally have you start to ween him ".  My stomach dropped . I know what you are thinking " Awesome "!  I so want to think and feel this too. I'm sitting there shaking my head in agreement while tears are filling my eyes.  I look over at Robbie and he is shaking his head too.  The Dr. then explains that he will not ween him just yet. Let's just lower his dose. I'm still on the verge of tears at that point.  He explains that Aiden has grown, his brain has grown, he hasn't had a seizure in two years!! I'm trying so so hard to concentrate and really hear what he is saying, but it's so hard. All I'm thinking of is how long, how scary two of his seizures were.
  We decide to drop the dose from 6 ml in the morning and 7 ml at night to 5 ml and 5 ml . IF he has a seizure it will be a mild one he says to us and then we will up his dose to what it was. I told him I'm freaking out as my eyes tear up again. This time there is no stopping them, they slide down my cheeks. He rolls over on his stool and starts explaining again in such a soft tone.  I get it, I understand. Why keep him on medicine and chance ruining his liver if maybe he has grown out of Epilepsy?  It's just so scary because we don't know.
  Tonight was the first dropped dose.
  Will the stomach knots go away? Will the tears stop flowing? Will there ever come a day where I'm/We aren't constantly thinking is Aiden gonna have a seizure?  Will we be there? Will we wake up if he has one sleeping like the other two? Every time we hear something when he is sleeping and we round that corner to his room with a pit in our stomach wondering what we are gonna find.. It's an everyday/every minute thing.   All I want to scream right now is ...I'm F****** Scared "!!!