Just a quick update. Thursday was a really bad day. About mid morning Jessica had a really bad and long seizure that was at least 1-2 minutes in length. At first I think that I was in shock. I was talking on the phone rocking Jessica for her nap and Jessica was having a lot of her jerks and they were pretty bad we are used to these but what followed I am not as used to. Jessica's pacifier fell out of her mouth normal for when she falls asleep which I had thought that she did but when I reached down to pick up her pacifier I noticed that her eyes were open wide and fixed all the while she continued to have jerks. I waved my hand if front of her face and got no reaction just blank stare as if she was not there after what seemed like forever she started coming around acting frightened. I took her blood pressure which was low but pulse rate was ok. I called neurology explained to them what had happened all the while having tears run down my face scared not that I have never witnessed a seizure like this with her before but the past ones had never lasted this long. Neurology nurse said that we should not wait till Monday to have her labs drawn and that she wanted us to go to lab today and also make sure that they drew a gabapentin level. Timing could not have been any better as far as that was concerned do to the window that she would have to be at the lab to have this test done. I drive to the lab get stuck in some traffic but still made it within the window to get a gabapentin level, let the lab knew that we were not just there for her standard orders but we had a timed draw that needed to be done. Well it took them about 1 hour to figure out which tubes that they needed to use and how much blood that they needed to draw. Now the window had passed to have her level checked and then we were asked to come back on Friday to have her labs done. By this point we were late going to her Cardiology appointment to have the holter monitor put on. I call cardiology let them know whats going on they said for us to still come in, more traffic jams on the way there uneventful getting her monitor on her and then start heading home in rush hour traffic no big deal although at this point I was getting less patient. I drive get almost all the way home stop by to pick up a pizza for the family for dinner upon getting out of the van a grab Jessica out of her seat and her holter monitor the recording box and happened to look at the screen and it says "shutting down" the next thing I knew the screen was blank and the power would not turn back on. I call the cardiologist on call to see if there is anything that we could do or that maybe I had touched a button or something while getting her out of her seat the cardiologist calls right back very nice and since he was still in the clinic he transferred my call over to the ekg lab to speak with them I talk with them let them know the message and what it had done and she informed me that they have never seen that message before and that maybe the monitor was malfunctioning. Needless to say I got home changed the battery the power came on but now I don't know if it is recording anything or not and it keeps resetting itself but either way I have to not only now take her in to have the labs done that didn't get done today I may have to drive up to Federal Way and get yet another monitor. 

What a day that it ended up being on Thursday. I'm trying to see good in this and having trust that all of the events that occured today occured the way they did for a reason. This is not as easy as it sounds but I am working on it.  Friday is another day and we will just put one foot in front of the other and march on. I know that we are not alone and that in itself really helps us to get through days like Thursday. Today Friday I press on having faith that today will be a better day. We will go to the lab around lunch time to have her labs drawn and I will be calling the Childrens Olympia clinic to see if any holter monitors have come back if not then I will be making another trip up north to get another one. Cardiologist on call asked me to take her to ER if her pulse got at or below 50 so far it has been in the 50's but not at 50 or below so far so good.

Sorry about my ramblings, I will post an update within the next couple of days or so as to how Jessica is doing and her lab results when I find out.