Today was a good day. Seth had many visitors today, and despite extreme lack of sleep, seemed energized by the interactions. His brothers spent time with us today, along with his grandparents, aunt and cousins. It was nice to have a change of pace and Seth really enjoyed the attention. It felt good to spend time with Ethan and Aiden and to hear about their week. I am so proud of the way they handle themselves when I can't be there, and thankful for our family who takes good care of them while we are away.
Today was day five off meds and after three consecutive nights of sleep deprivation, still we wait for seizures. At this point, unless Seth has multiple seizures very quickly, we will not be able to move forward with the second surgery on Tuesday. If that is the case, surgery would tentatively be rescheduled for the following week and we would continue with nightly sleep deprivation to attempt to induce seizure activity. Please pray that Seth's brain cooperates and seizures come soon. Not only are we all feeling physically and emotionally tired, but Tony and I want to get home to our other children as soon as possible as well.
While I do feel a little bit discouraged that things aren't moving exactly according to plan, I try to keep my eye on the long term outcome, not just the here and now. As Seth's neurosurgeon said this morning, we haven't come this far to stop before we complete the marathon. We may have to walk the last ten miles, but we're going to finish.
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