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...
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...
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...
Best news I have heard all day!!!! Love you guys!
ReplyDeleteHurray!!! Praise the Lord!
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