Tuesday, December 15, 2009

The Plan

Part of what I like about Collin's neurologist is that we always leave with a plan of action that makes me feel involved and empowered. After a nearly 3 hour appointment, only half of which was waiting, we were armed with a better understanding of Collin's seizures, his meds, what we could do on our own regarding the two, and what we would do in the event that these actions didn't work.

Obviously, we decided not to be admitted to the hospital. The neurologist felt totally comfortable with our ability to manage the situation at home, particularly since he is on call right now and we would be able to contact him within minutes at any point. We also discussed a plan for pursuing a better understanding of what Collin's underlying condition might be. This includes some of the same tests mentioned by the geneticist yesterday (MRI, muscle biopsy), and a few others (ERG and VEP to learn about Collin's vision, another blood test, etc.).

A very intriguing option the doctor mentioned was the ketogenic diet. We had discussed this in the past, but we didn't know much about it and I was anxious for Collin to stay on breast milk as long as possible. But between the doctor's comments and my own research this evening, it seems like a viable and potentially exciting option. The only drawback is that you have to be admitted to the hospital for several days in order to get it started, but we're hoping to combine that with our upcoming trip to Cincinnati in order to cut down on individual hospitalizations.

We all got ready for bed early tonight, anticipating a tough transition to sleep at least similar to last night's. While Kyle was upstairs, I took Collin into the den to watch Christmas cartoons and do a little physical therapy. He cooperated surprisingly well, but pooped out pretty quickly. So, I snuggled him close for a few minutes, fully aware that he would probably launch into a seizure soon, but hopeful that he could get a few minutes of sleep before it came. Except that it didn't come. He slept through Charlie Brown Christmas and then through The Snowman. We hadn't even given him any extra medicine. Then Kyle carried him upstairs and changed him and he barely stirred. This makes us really hopeful that the Keppra is starting to work and that we will have some seizure control soon.

Hopeful might be the wrong word, actually. As a means of self-preservation, we try not to be hopeful because it involves too much focus on the future. What I should have said is that it eases some of the crushing weight we're carrying. It makes our present minutes a little easier to breathe in.

4 comments:

  1. Two things:
    1. Keppra or Charlie Brown Christmas? You decide.
    2. I clicked the Ketogenic website. I saw Meryl Streep. That's all I need to know.

    Seriously, we are thinking and praying for you constantly. We love you so much.

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  2. You're in our hearts and prayers!

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  3. I am praying for you constantly. I prayed specifically that God would provide some relief from the intense burden of yesterday and to give you and Kyle strength for the journey.

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  4. I'm praying that some answers come from your trip to Cinci and that the seizures come to a complete end...we don't live too far from the hospital, so if you need anything, please don't hesitate to call me. Love!

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