There are moments in life you realize you are avoiding the elephant in the room.
You know those moments… you try to avoid a subject that will make someone sad or upset or angry. You overlook the obvious to avoid embarrassment. You don’t ask that question that you don’t really want the answer to.
Today I tried hard to avoid the elephant in the room. Harper had a busy day, spending her morning at the hospital for labs and tests and x-rays and her afternoon in therapy appointments, and by the time we got out, we had results to deal with.
Despite decreasing the seizure medication that has been treating her ESES these last six months, the lab results today showed an increase in her ammonia levels. That was NOT the news we were hoping for.
As soon as our neurologist in Baltimore saw the results, she called me to discuss what needs to be done and what that means. We immediately started a prescription to try to rid her body of the excess ammonia, and we will work to wean her completely off of that particular seizure medicine over the next week.
I was on the phone with someone this afternoon, sharing this information, and they asked me, “So what’s next? What’s the plan?” They addressed the elephant in the room that I had been avoiding, because the answer is one I didn’t want to face- nothing. There is no plan.
What does that mean? It means more bloodwork as we try to get her body where it needs to be to avoid damage to her organs. It means Harper is no longer a candidate for this treatment for her ESES, and we have another failed seizure medication. It means we have no plan as of now other than to watch and see if she goes back to having life-threatening seizures or if she continues to regress developmentally from the ESES. It means no one really knows what to do now.
It means more sleepless nights for this mama. It means putting on a brave face and weeping when I’m alone. It means my heart aches and my brain does not understand. It means choosing to believe even when I cannot see.
But it does not mean we give up. It doesn’t mean that the miracle isn’t coming. It does not mean that I do not trust my God. It does not mean that He is not working and that He is not good. It does not mean that our story is over or that we are defeated.
Friends, we need your prayers over the next few weeks. We need those ammonia levels to go down. We need the seizures to stay away when the meds stop. We need her brain to grow and develop and not regress. We need her to stay healthy and well through all of these medical appointments and the upcoming traveling. We need to trust in God’s perfect timing. We love and appreciate you all 💜