April 11, 2014
We sat in the room for almost two hours and dialogued on how the brain works. Chase fell asleep in my arms as Bob and I sat with the epilepsy specialist, discussing the EEG results and asking our questions. The human brain is an amazing place; full of energy and a fragile balance that the slightest thing can disrupt at any time. Marvelous and scary.
Despite Chase’s anti-seizure medication having some issues, after two hours of discourse and answered questions, we were counseled to stay the course. We were told that Chase’s brain was still too close to it’s trauma and needed to be protected from itself. Because Chase’s behavior was stable, we were to stay the course, increase his vitamins and call in three weeks to follow up.
[We were also re-briefed and updated on monitoring for any sort of seizure and the actions we should take if we ever observe anything. This included a seizure crash kit of sorts that travels with Chase at all times…just in case.]
May 2, 2014
Three weeks came and went and even with the extra vitamins, the aggression issue didn’t seem to improve at all, so, despite the continued need for neuro protection, the specialists conferred and decided to try reducing the anti-seizure medication. It’s only the tiniest bit (literally only a half of a milligram on one of the two daily doses), but over the last four weeks, we’ve seen a little improvement!
We’ve had some really encouraging, productive conversations with his teams of doctors and are feeling heard on this issue, however, there’s still much left to understand. Nobody knows for certain if what we’re seeing are the effects of medication, or radiation, or tumor, or being forced into an adult life at age two. The one thing we know is that whether we’re in a hospital room with specialists or in our home, with our family, working through a difficult moment; pursuing answers will be a marathon; not a sprint, and only time will prove…
We would so appreciate your continued prayer for wisdom and discernment as we continue to approach who Chase is and how to best care for him in all his facets of this special life.
Moment by moment.
Hear me, O God, when I cry; listen to my prayer. You are the One I will call when pushed to the edge, when my heart is faint. Shoulder me to the rock above me. For You are my protection, an impenetrable fortress from my enemies. Let me live in Your sanctuary forever; let me find safety in the shadow of Your wings. Psalm 61:1-4 (The Voice)
I believe that because our bodies are all so different in so many way, it is essential to define, somehow, exactly the correct amount for each person.
And this can change. wouldn’t it be awesome if one could wear a monitor that would read the exact dosage each day? Let’s all pray for that and that Chases’ dosage will be right on track. in Jesus name. amen.
Thanks for the update. This little boy is in my prayers every single day.