It has now been almost two weeks since Harper’s seizure and our trip to the hospital. I would love to say that things have just hopped right back to normal, but of course they haven’t. I guess we are just adapting to a new normal at this stage. She is adjusting to the anti-seizure medications, but it’s a slow process. The side effects have been a bit tough on her, making her tired and spacey, decreasing her energy, and affecting her moods and sleep patterns. She doesn’t talk as much, doesn’t run around and dance and play as much, and has struggled with getting “good” sleep. However, the doctor says that is all to be expected and that hopefully it will get better as time goes on.
The good news is that we haven’t seen any more major seizures. In two weeks, she’s only had two “episodes” that seemed to be small seizures… Both were only about a minute long and happened really fast, so that was a huge relief! The pediatrician checked her out and said she looks “amazing” considering what she went through, and we haven’t seen any regression in developmental skills. While she is doing great and we haven’t seen anything close to what we saw on that night two weeks ago, I am still nervous about letting her out of my sight, and we’ve moved a toddler bed into our room for her so that we can hear her if anything happens overnight again. We have monitors and video now for her room, but I worry that I just wouldn’t hear her on those if I was asleep. So, right beside me she stays!
Unfortunately, despite my efforts to quarantine her as much as possible, she has still managed to stay sick. She has had cold, cough, and fever pretty much since the seizure, but no infections, so hopefully her immune system will kick into high gear soon and beat this stuff! This means we are watching her even more closely as this lowers her threshold for seizure activity.
For now we just keep trucking on. We are gradually getting more accustomed to our “new normals,” and we have lots of appointments in the next month that will hopefully have us more and more back on track. In March Harper will go back to Duke for an EEG and a consult with her neurologist, and we also will go to the NICU clinic here in Wilmington for developmental testing (hopefully our last round there!). This whole experience has been a difficult reality check as we have been reminded that there are so many uncertainties with Harper. If we focus on all that can happen and go wrong, it can drown us. We have to choose instead to focus on all the miracles God has worked in her, and trust that He isn’t finished yet. He has big plans for her, and He has promised to walk this journey with us. As the saying goes, we may not know all the why’s, but we know Who, and that’s all we need!