Thursday afternoon

We had our meeting with the neurologist and neonatologists this afternoon, so want to bring you up to speed. It was a good meeting and the neurologist took a lot of time to answer our questions and let us know how he was approaching things. The bottom line is that there is much about Finley that remains a mystery to them. There is a long list of things that they know did NOT cause his seizures, but the list of things they know caused the seizures remains empty. And, although they won't say this explicitly, I think they are pretty sure they will never know. With that being the case, all they can do is treat the seizures and eventually try to wean him off the drug and see if the underlying cause is still there.
So the plan is this: he will be discharged tomorrow and we will give him his daily dose of the drug for a month. If he has no seizures at all in that month, he will go back to see the neurologist for a check-up. If that goes well, the weaning process will likely begin in earnest. The weaning is really starting right now with baby steps: they are going to leave the volume of his dose constant for the month, so as he grows, his mL/kg level will drop slightly. The neurologist was very forthright in saying that he has no idea what the necessary level for Finley is and that there is no way for him to know. So all we can do is continue to tiptoe forward and hope that we feel the ledge before we fall off of it. He assured us that, while no seizure is a good seizure, it is very unlikely that a small number of seizures will do significant longterm harm to an infant. And, although phenobarbitol has been around since before 1920, there have never been conclusive studies of its harmful side effects. The ultimate goal, then, is to minimize his exposure to the drug while maximizing his protection from seizures. That balance is further complicated by the complete mystery surrounding the cause of the seizures... is it still there?... will it be gone in a week? a month? ever? We feel very lucky to have such an experienced paediatric neurologist making the recommendations about Finley and we both feel comfortable with the strategy he has recommended.
What this means is that we will be on constant watch for the return of the seizures. We are obviously going to have to figure out how to fit this role into our lives without letting it rule our lives. The intense experience of the last two weeks has been very good preparation for this methinks. With each passing day, our tension level drops a bit as this whole experience settles in as part of us.
The neurologist also clarified his earlier comment about what he observed in Finley's EEG last week. You will recall that he described Finley's brain activity as "not horrible", explaining that he saw some "abnormal" activity. What he meant is that Finley's brain activity was the brain activity of a sick baby... he would expect similar activity from a baby with pneumonia or other illness. He was not saying that he thinks there is something abnormal about Finley's brain (which agrees with the MRI). Again, the root cause of Finley's specific "sickness" is the mystery that remains unsolved.
We can't help but feel a bit uneasy as his planned discharge draws closer and becomes more of a reality. We want to feel nothing but joy because this is what we have dreamed of since the night he was born. But we have to be realistic about the very real possibility that it may not go as we expect it to. So we celebrate each minute that gets us closer to the dream while being as prepared as we can be to deal with any surprises that may be around each corner.
Thank you for your faithful support and prayers along the path thus far. We have not once felt that we were walking alone.
Much love,
Wireless Fin and his two biggest fans