Leo, Our Little Lion Man

      Thank you so much for your prayers! This morning was not what we had been expecting. Neurology came in around 9am (EEG is planned to run until 2pm). They asked if I felt like he had done all of the questionable behaviors while attached to the EEG. We really felt like they had gotten the full picture. The behavior that the doctor saw which started this question was definitely present multiple times. There were some other movements that happened that I thought, "I'm glad that happened while he was hooked up. Now they can tell us if that's a seizure or not."      After confirming that she said, "Well, the EEG shows that none of that is seizures." I teared up immediately and said, "I'm sorry. I've been anxious about this. That's great! Keep going. I'm fine. I promise." So he is high risk for developing seizures--which is not new information to us--but he is not having seizures.     Once again, I want to write more. I have so many ...

      I am working on another post with some pictures and more like a journal of our time here. But right now I need to try and get some sleep. But I would like to update anyone looking for an update!     We are around 10 hours into the 24. This has gone so much better than expected. Leo was in mostly happy moods until right before falling asleep. It's not fun seeing him in the EEG head wrap. Feels like he's a really sick kid. And it's not fun pressing the red button when you see behavior that could be seizures. And then it's really not fun to think about neurology coming tomorrow and possibly telling us about all of the seizures that he's having. The EEG is kinda just in your face and ugh. But Brad was here the whole day. And we've had really cool nurses.      Prayers appreciated for the night. Leo is asleep and then almost waking up with some pushing and fussing. I think he's getting frustrated with the head garb. All the wires plus his night ti...

      Well, the past two weeks have carried a bit of drama for us. I meant to write out more of my thoughts in the moment, but the moment passed me. So, a bit of a long story short: Leo's pcp wondered if she was seeing seizures.     That lead to doing a 30min EEG. The results of that EEG showed some "abnormalities". Neurologist from CHOP would like a 24hr EEG to give us a better picture of what's going on in his brain. It seems to me that seizures are not as black and white as I thought they were. There has been talk of "will this weird brain activity turn into seizures?" There's just a lot of looking and assessing. No one has said that the 30min EEG caught "seizures". Also, his neurologist said that she would not feel comfortable prescribing seizure meds without doing a 24hr EEG.      So tomorrow morning we are headed to the ED as that is the quickest way to get admitted for a 24hr EEG. Today was a bit hectic in trying to assess with his neuro...

      Hello, beautiful people! I'm coming on here with the intent of being quick because I am headed to bed and sleep is important :) We have an EEG scheduled for Leo this Wednesday. Would you cover that EEG in prayer as well as tomorrow leading up to it, specifically for me and anxiety anticipating the EEG? So, an EEG is to look for seizure activity. This isn't as dramatic as it sounds at the moment but seizures for Leo are a huge fear of mine. His PCP has twice now wondered if she witnessed him having a seizure. It was essentially him being very still. I have so many reasons in my head why I don't think it was. And, honestly, I think there's validity to a lot of them. However, she's doing her job in looking into any time where the question came up, "was that a seizure?" With Leo's history, you have to take those seriously. She is definitely of the mind that it could be nothing, but also thought it would be good to check it out.  The other thing about...