Friday, November 26, 2010


Jacob and I are hanging out in the ER a 3rd time over the last 2 weeks. This time, Jacob and I planned this trip. I packed my bag, and brought all of Jacob's supplies. It was time after having yet a bad night with long seizures over night only a few hours apart. It was time when we had seen no improvements in Jacob's seizures despite making many, many med changes over the last couple of weeks. It was time to realize that we once again needed Children's Hospital to help us fix our little boy.
Everyone has been wonderful. From the minute I walked into the ER waiting room, being moved back to the trauma unit right away despite Jacob not seizing, but just because Jacob is Jacob. The ER staff knowing well too well how quickly he can change. The team knowing us so well, so the minute I said that I think we need to be admitted, that was the plan.
We're still in the ER, since we are starting a new medication tonight. We're watching for a reaction to the medicine before being moved up to the floor. If Jacob does not seize over night, we will give this medicine a shot. If it doesn't work, there is already talk about putting Jacob on Versed in the ICU. But one step at a time.
I feel at peace tonight that we're here, and a tiny bit of hope, that maybe, maybe this is the medicine that will do the trick and stop Jacob's seizures. I know it takes time. It's never a quick fix, but at least we're trying something new tonight.
We're truly scared to see Jacob's seizures so out of control again, knowing very well how quickly things can escalate as your brain is not functioning as it should. The memories of this time last year still very fresh in our minds.
I am thankful we got to spend Thanksgiving at home. Sarah was happy to pick up her brother yesterday morning from the ER. Jacob had a good day, and we all got to be together. Thanks to Whole Foods, we were able to get a really nice meal on the table, since there was really no time to cook. I am also once again so thankful for everyone reaching out to us. It just never stops to amaze me. There is one thing I have learned on this journey, and that is that it takes a village to have Jacob in our lives, and I would never trade that village - or Jacob for that matter - for anything in the world.
Love, Maria.

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