This morning Hubby and I got up at the crack of dawn and
braved rush hour traffic for an appointment with Alyssa’s epileptologist. (An epileptologist is a neurologist with 2 additional
years of specialized training who only treats epilepsy.) We hadn't seen her since December because
Alyssa is fairly stable at the moment. In
fact, in May we will have made it one year without a tonic-clonic seizure (what
used to be known as grand mal seizures.)
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| Daddy, Alyssa & Super Bradley checking out the games at the children's hospital. |
A year without seizures is a huge milestone in the world of
epilepsy. Ironically, it is also terrifying.
If Alyssa maintains her streak over the summer, then in the fall we will start
to slowly wean her off of at least one of her medications. I have a love / hate
relationship with those medications. On
the one hand she takes large doses of mind altering drugs every day with a
whole slew of side effects and an undetermined impact on her development. On
the other hand, those drugs are keeping her alive.
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| Pink band-aids and suckers make everything better. |
The other fly in the ointment is that the lack of seizures is allowing us to see the behavioral and cognitive challenges that Alyssa faces. She is a complicated kid in that regard. It is hard to tell what is the medications, the disorder, damage from seizures or a result from the abuse she suffered before coming to us. What is clear is that we have a long road ahead of us.
Tonight, I am cautiously optimistic. I am choosing to enjoy this space between clusters, regardless of how long it may last. I am choosing to be grateful for the amazing team of professionals that we have built even as we amass more specialists. I don’t know what tomorrow holds, but I am looking forward to hitting the one year mark, and whatever comes after that.
