Movement

     About a week ago we had another hospital stay for a 24hr EEG again. Leo had a movement happen one morning that was a new one. It was kind of like tremors or shaking. I took a video and sent it to neurology. I also mentally took in all the observations that I could that I thought were important. Neurology was concerned with the video and felt like we needed to go get an EEG because there could be a chance of the movement happening in the near future again. And we want to get it on EEG if we can. 

    Spoiler alert, we didn't catch that movement on the EEG. However, Leo had another 24hrs of EEG which showed no seizures. I was also encouraged that the abnormalities that it showed again were being described in the same way as last time. Meaning, this is Leo's baseline, Leo's normal. That's not to say that something can't develop. But I'm encouraged that it seems like his brain is functioning in the same way that it always has. 

    With the EEG data as well as watching the video, neurology thought it was "highly unlikely" that this movement was a seizure. We discussed a couple of options moving forward. And we discussed a couple of scenarios as far as what movements constitute coming back to the hospital for an EEG because we really don't want to be running in for 24hr inpatient stays a lot. However, we also want to take seizure concern very seriously. One of the things we decided was to switch from following with neurology at CHOP to following through Hershey. This means that we can see neurology at an office that's about 5 minutes from our house. We want to be seen more in person so closer to home makes more sense right now. We love our neurologist at CHOP but it seems like the time to switch.

    I also observed that new movement again yesterday morning. So that's about two weeks later, I think. All of that being said, things feel a little off at the moment. We're wondering if this movement has anything to do with Leo growing. He weighs the heaviest he's ever weighed. We started a new medicine to help with digestion and such and it's helping. He's been sleeping a lot longer at night. We're just wondering.

    I don't know if I'm describing all of this well or if it's just very scattered and not clear. I'm trying to tell you what's going on, but I'm also finding myself not wanting to invite other voices in. It feels like the more people I tell about it the more people I have to convince that Leo's not having seizures. Or like when I tell someone that he may be having seizures and they disagree with our assessment of the situation, well what if I'm wrong? Like it can send me into another tizzy of reasoning and assessing. I don't know if that makes sense. This has all been good practice of being confident in our God-given roles as Leo's parents and stepping forward in that. There's just so much that feels not clear but you have to still figure out how to take steps forward. Does that make sense?

    It's just a lot more of a grey area than I ever realized. It's like, he's got this movement. We don't know exactly what is going on. It could be something concerning. It could be nothing of concern. How do we take the information that we know and move forward? It's staying open to change constantly because we just don't know. It's hard. 

    But, also, in my brain I am very comfortable with the steps that we are taking. I don't think it's a seizure. We have an appointment with rehab medicine at CHOP next week and we will follow up with neurology in the near future. We are keeping the right people up to date with our observations. We are asking questions and observing. And, overall, Leo is very much himself through all of this. He is acting very much his normal. But it's a bit of a rollercoaster.

    That's what's up right now :)