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...
I don't know why I'm having a hard time starting this post. So, see I've been floundering with writing another update because I have this internal conflict. One side says, "I need to talk about Leo, how he's doing, and nothing else." The other side says, "There's not much to update on so do you need to keep writing?" And, yet, another side says, "Your friends read this to hear about Leo, not your thoughts." But, in reality, this blog has changed its shape. It started the night Leo was born. It was a way to tell our community what was up for Brad, Leo, and me as the world as we knew it had shattered. It was way easier to write one post than send a thousand texts (and that's zero complaint about having community and people to text). It was literally the medical updates that doctors would give. And throughout Leo's life, those have gone from multiple updates in a day, to multiple appointments in a week, to months and months...
My new blog! The blog we started on the night Leo was born had a very specific purpose. We could update our community on what our journey looked like. We could tell our community what was going on in our lives as we experienced one of the most difficult periods of our life. As Leo's days outside of the womb grew, we gave updates on each talk with a doctor, each appointment, each step of the journey. 4 years later, life looks very different. Things aren't changing as frequently. Routine does exist within medically complicated parenting. More than that, though, progress looks very different. I have an interesting relationship with that word: "progress". Here's the thing, we often define "progress" in terms of physical capabilities. Toward the beginning of Leo's life, we were asking questions about Leo's weight gain, eating journey, physical development, and such. Through many of these questions, we could see "progress". We s...
Best news I have heard all day!!!! Love you guys!
ReplyDeleteHurray!!! Praise the Lord!
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