EEG Day.....and results!

     Friday went so well!! My sister-in-law, Amber, came into Philly with me and we were feeling very accomplished at all that we could do before 12pm. Leo's first appointment was at 9:15am and we were home around 2:30pm.

    Getting the EEG was interesting. We got in the room and I laid Leo onto the bed. The lady (I don't know her job title) then said she had to swaddle Leo so that she could attach all the wire things to him. He did not like that. That was honestly the hardest part. He wasn't completely losing his mind. He was doing better than I would've thought. But he was not happy. I held his hand, put a teether in his mouth, breathed on his face (I know it sounds weird, but it can help calm him down) and sang to him. They helped a little bit. While this was going on I asked the lady about results. She said to expect them in about a week. 

    So Leo stayed strapped up for maybe 3-5 minutes of the EEG. Oh. I forgot to say that while she was getting him hooked up, she told me that it's best if he stays as still and relaxed as possible for the best read..............yeah. "Good luck" is what my mind said, but out loud I said something to the effect of, "Well, he doesn't really stay still. I will try and help, but you tell me if we need to change something." I was feeling perturbed at our neurologist who had ordered this knowing how Leo moves. I didn't want for this to be a fail and to have to make a second Philly trip for the same thing only sedated. I did talk to a friend who said that they might not do EEGs sedated because it would read differently. So I'm not sure if that was even an option. But anyways, after a couple of minutes she moved a chair over so that I could hold him--but I wasn't supposed to rock too much or that would throw off the EEG.

    Let me tell you, once I held Leo I felt the prayers of the Church. He was tired from the trip and from fighting the swaddle. But that boy sat with me--so very still, watching the TV--for 15 minutes. I have never seen him that still before. Amber also saw Leo's eyes looking directly at the tv so that was pretty cool too. I was rocking ever so slightly. I couldn't believe we were done when the technician stood up and told us we were good. Leo liked that little shampoo that she did afterwards to get some of the gunk out of his hair. 

    Amber and I then visited General Surgery for a quick appointment. Leo's moving agitates his tube site some so we just wanted to get some insight into that. Is he hurting it? Is it infected? Is this just the way it is? Is there something we can do to help him not hit it? So basically, Leo's hitting his tube site isn't damaging the sight. It does make it more sensitive at times. I’m going to ask other parents of kids with special needs about my concerns and go off of their creativity. 

* above was written Monday afternoon, below was written Tuesday morning

   We got a message from our neurologist Monday night that said that NO SEIZURES WERE DETECTED!!!!!!! Praise the Lord!!!     Now it’s funny what the devil does. Immediately he goes, “Well what if there are some, it just didn’t detect any.” And you know what I have to say to that? God is bigger. We are still being watchful. We are so very aware of the possibility of Leo developing seizures—oh so very aware. We prayed they would show up on the EEG if they were there. So we say, “God, thank you. Help us see them if they come. Thank you.” And we go from there. Praise Jesus that there weren’t any seizures.

    On a personal note, different things hit me weird about this experience. Being next to Leo while he was getting hooked up and smelling the CHOP linens....that reminded me of his tube placement surgery and that was not a fun memory. Seeing him with the EEG stuff on reminded me of his first couple weeks of life and that was a strange feeling. It's weird what things--dare I say--trigger things.