It’s been a little over a month since my last update (I guess I wasn’t kidding when I said you may not hear from us for awhile), so I wanted to share what’s been going on lately with our Dottie girl. 

After coming home from the hospital post rhino/enterovirus, Dottie recovered really well. After only a few days of oxygen support all day every day, she was able to wean back to just needing it at night again. She’s been eating like a champ and gaining weight, finally weighing over 8 lbs and working toward 9. At 5 months old, that’s a big deal and something we definitely celebrated. We’ve been adjusting seizure meds, trying to find the sweet spot where the seizures and spasms are controlled well, but the meds aren’t causing too much sedation. And, like I mentioned, we isolated for a bit and have been super careful about protecting our girl as much as we possibly can from exposure to illness. I definitely struggled for the first few weeks home with anxiety around germs and keeping her safe. Even feeling comfortable with sending Charlie to school was a challenge. But since then, I’m doing better about trusting that there’s only so much that we can control, and that if we’re doing that, I just have to trust that God has the rest. Definitely easier said than done. 

Dottie was in a really good spot with all of her meds, doing well overall, and we’d managed to stay away from the hospital … until this past Thursday night. We’re not exactly sure what happened, but during the day on Thursday, Dottie went from having one or two seizures every other day with a few clusters of spasms here and there, to suddenly having 12 seizures in one day. As alarming as that was, it was her subsequent struggle to maintain o2 saturation during sleep that caused a trip to the emergency room Thursday night. We were there from around 11pm until 5am Friday, and honestly, didn’t really get any answers. Of course, once there, her o2 saturation was fine, so they couldn’t explain that. And after receiving her evening seizure meds and an extra dose of one of them in the emergency room, her seizures were under control. So, they sent us home with instructions to increase one of her meds, and that was it. She’s still struggling a bit to keep her o2 saturation up, so we’ve made the decision on our own to keep her oxygen support on all day in addition to at night. She’s doing better there, her o2 numbers have been higher, so I’m praying that soon we’ll feel comfortable going back to oxygen support only at night. But we’re going to let her show us when she’s ready, since again, we have no explanation right now for why she’s struggling. Her seizures seem to be better controlled with the increase to her meds, which is encouraging. Again, no real explanation for why she had 12 seizures on Thursday. 

So, what’s coming up? This Thursday, the 30th, Dottie girl has a previously planned MRI to check on the growth of her tumors. This MRI is scheduled to be outpatient and will get images of her entire body to make sure there hasn’t been any growth anywhere new. 

Thank you, sequoias. 

Even if.