Leo, Our Little Lion Man

      A bit of a journal entry from our 24 hour stay at the hospital to get a longer EEG to see if Leo is having seizures as irregular behavior had been noted as well as some irregularities on a shorter EEG.     I could not figure out how to get these in the order that I wanted. So, I apologize, this is not in chronological order. Just take these as snapshots with my thoughts from this visit.  I just wanted to show that when they were putting the EEG on his head there were three people around him. Mainly two of them were marking his head and placing the glue. He was genuinely enjoying the touches and the attention. He kept looking back and forth between them and making happy noises. It was such a blessing that he had a good attitude.  This is simply so we mamas can feel a little less alone. This picture was when we got checked into our hospital room. It was around 2pm. They had just started the EEG. I was painfully processing the reality of what a 24hr...

      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...

      So recently, this fear has been creeping up on me. I believe that it's part of grief. Grief is an old friend of mine. She really is. As a mother, grief isn't with me all the time anymore. But we still talk occasionally. When Leo's birthday came up this year, Grief didn't really visit me beforehand. I didn't cry every day leading up to it. I wasn't overcome with all of the wishes I had for my kid that can't be realized. I wasn't painfully aware of the timeline on the day of. This year Grief dropped in on Leo's birthday, but didn't stay for the party.      On March 7th, the anniversary of the day that I went into labor, Grief came and sat with me. We talked about what labor looked like and felt like. We talked about how I did in labor. We talked about the amazing things that my body did to birth a child. It was nice to have someone understand that on the day Leo was born, I felt like I hadn't done enough. Because Leo needed more help afte...