Thursday, May 20, 2010


As we in my family now say whenever we call at an unexpected time: Nothing's wrong.

Collin stopped having seizures last week and has bounced back fairly quickly. He's happier and more vocal again and has been doing some great things in physical therapy with rolling and lifting his head. We're weaning him off of clonazepam finally and he is now on all real food. I calculate his meals using the Ketocalculator program, then carefully measure and weigh the ingredients for the next day's 5 meals (plus an extra just in case I, you know, shoot half of a meal on the ceiling). This means that Collin is officially off the feeding pump. He gets all of his meals by syringe, which is portable and more flexible. We have also started Collin's full dose of branched chain amino acids (BCAA). At first, I was worried that they were having an adverse effect because his ketones dropped quite a bit earlier this week, but then I realized that I had also switched from olive to coconut oil around the same time. Since switching back to olive oil, his ketones seem to be rising again, so we will be keeping an eye on that.

All that to say: we're fine. I just needed a break. Mother's Day ended up being a little harder for me than I anticipated, not because I don't love being Collin's mom, but because there are just a lot of emotions to process and expectations to adjust when your child is facing so much more than you could have anticipated. It changes their experience as a child and consequently yours as their mother. Plus, Collin was in the worst of his seizures around Mother's Day, I got sick, and was running too low on sleep. So we fell back on the healing powers of 'laying low.' We canceled all appointments, therapies, and unnecessary responsibilities for a week to allow us to focus solely on the basics: Collin, each other, eating, and sleeping. That's right, internet didn't make the list. It shocked me too, at first. It was a very good thing, though, and we emerged not only better rested and relaxed, but with clearer minds and a bit of direction.

Because we're coming to a point where we're starting to look down the road (just a little ways) and think about what we want our lives to look like. The downside of living only in the present, while it is totally necessary during 'survival mode' times, is that you can feel kind of stranded where you are. Like there's nothing to move toward. And that's just not true. Of course, we don't know a lot about what has caused Collin's challenges and we consequently have no idea what his future holds, but we do know what we want for our family: a normal life. Normal for us, anyway. With friends and family and play groups and vacations. With hobbies and date nights and just eating up all the little pleasures of a simple life. Yes, there will be complicating factors that wouldn't be considered normal to some people, but that's okay. Yes, there are lots of things we could be afraid of, but what's the point? It doesn't make us any better prepared and it doesn't benefit any of us in any way.

This might seem like an obvious goal, but it has taken us a while to get here and we're still just on the brink of it. I guess it's kind of the acceptance stage of the grieving process. And as far as making it to that goal, we don't have a clear cut plan to execute. I think it just helps to know where we're going.


  1. Time by yourself to regroup and restore is just what God intends for us. The time to take a deep breath and come away with a new direction is refreshing. It sounds like Collin is making lots of progress (with the guidance of wonderful parents).

    I have learned throughout my life that there always seems to be a new normal to get used to. Readjustment to circumstances seems like a lifelong process. I tell you this to let you know part of what you are facing happens throughout life. The thing I have learned (and it came the hard way) is roll with the punches and I no longer expect my feet to be always planted on the ground.

    Glad to hear Collin's seizures have abated, meals are going well. Annie - you are a terrific mother, so intuitive. God bless and your family is always in my prayers.

  2. I've been reading a lot of One Fish, Two Fish, Red Fish, Blue Fish lately, so my perspective is most likely tainted. On that note, every time I read Ketocalculator it reminds me of something Dr. Seuss would create. And I'm sure he could write a book about one of those calculated meals being flung on the ceiling :) If only you had a Cat in the Hat to actually clean it up for you when it was all said and done.
    I think date nights, play dates, hobbies, and vacations sound like excellent goals. Let me know if I can help you achieve any of them once you get a plan in place.

  3. Your writing is almost poetic, Annie. You have a beautiful family and an amazing heart.