Just like the wheels on the bus, I guess

So we have been here before and I know we will circle round again. And again. But each time we make the lap the fear whispering at our shoulders threatens to roar. Go away my friend. We've got toddlers to chase and appointments to manage and art walls to build. But it is there and it can't be ignored forever. It finds a way through. We have grown accustomed to it really. As much as a sane person can, that is. Okay mostly sane. Some day a therapist will get a hold of me but right now, we are saying sane. I mean really we held off on ordering cribs for our babies until they were several weeks old because we didn't know how many we would need. Reason for return? Exactly. Before we brought her home Mya's neonatologist shared with her daddy the one and only life expectancy that anyone has had the courage to give us: 2 years, and it would be the common cold that took her. Apparently wrong. At 7 months we learned that the seizure activity in her brain would very likely stall her development. The opposite of fantastic. So right, we get it fear. Move along. We are full up. And we are tired. And we want to enjoy our kids without you in the wings.

Over the last several weeks Mya's seizure activity has increased significantly. The weekend before last she was having 5-10 before her first feeding and at least a half dozen in the hour I held her at night. I shutter to think about what a 24 hour EEG might have looked like. At our last neurology visit several weeks back we decided on an increase in one of her seizure meds to hopefully address 3 separate issues: her inconsistent sleep, her increased muscle tone, and her seizures (oddly enough). And while the increase did seem to help with the sleep it did not have an impact on her seizures at all. Or maybe it made them worse. It's hard to say. So when we called last week with the update our Neurologist immediately made some changes doubling her morning dose of her second seizure medication and increasing her baclofen to hopefully address the tone. And these two medications together have held the blame for her transformation into a zombie a year ago which lead immediately to her need for a g-tube.

Bringing us to today. And today she woke up at 2:30. PM. And fell back asleep before 7. The weekend wasn't much different and so today we must tell the fear to move along. But it isn't listening. What if these are our choices? What-if we are returning to the days of carrying a sleeping child from room to room and they stop the seizures but the result is a little girl who can't enjoy the reprieve because she is out cold 20 hours a day? Or she gets so tangled in the web of side effects that we cannot tell up from down? What if we never get this figured out? I am tired of watching my child go through this every single day. They scare her. She cries and is confused and gets knocked off her game. Or she sleeps. I don't remember the last time I saw a smile. A real one. What if she never gets that back? But we have to hope that she might. We have to pray that she will. So move along. In the mean time we will take our naps all over town and do our art projects in shifts. We will enjoy some extra cuddles.