I apologize for leaving you hanging for so long. Since we got home things have been a little crazier than usual. I will take you back to the day after our last post...
We were released the next day. As predicted, they saw nothing on the EEG. In most cases - this would be good news but in this case its just a double edged sword (so to speak.) You see, there are seizures that don't show up on EEG's because they are so minute, or because they are so deep in the brain, or because the electrode isn't picking up from the area that the seizure is coming from.... so the test isn't definitive.
Obviously, I don't WANT Phillip to be having seizures - but the fact is, I am fairly certain that he is. This behavior is something that is repetitive, he is disconnected during the events, and he sometimes stares. I just really wanted a definitive answer and unfortunately "nothing showed up on the EEG" is NOT that kind of answer. I wanted someone to say "this is definitely not seizure activity because "this" is what it is." Not a "hey nothing showed up on the EEG so its "probably just a behavior."
I am going to start keeping a diary, of sorts, so that maybe I can find out if there is a trigger, or a common denominator in all of this. I am honestly not sure WHY I haven't done it before this. I guess I get caught up in my every day life and forget the extras that I may need to be doing. Sometimes it takes everything in me to just get all the MUST DO things done.
So after we arrived back home, we spent a day hanging out with my cousins and then had to say a sad good bye to them ( hoping they come back soon though!) and therapy and regular life kicked back in for a couple of days. Phillip had to be taken to his pediatrician for an infection that required a 10 day dose of Bactrim. Thankfully that is all cleared up and he had no ill effects from the medication. (We have a follow up appointment with a specialist to try and remedy the issue that caused the infection.) Then we made an impromptu trip that made everyone smile and we had a blast. It was a much needed mini-vacation!
That brings us to the here and now, where our day to day is about to start back up- therapies, dr appointments, medications, snuggle time, school time, swimming, laughter and love... its a good day to day. :)
I hope this update finds you all healthy and happy. As always, thank you for taking the time to read our blog. Please feel free to leave us a comment since we don't have a guest book!
God Bless,
Misty