We are finally at two years of seizure freedom!

I have been waiting for this Wednesday for nearly 3 years and 9 months.

Connor enjoying one of his first keto meals at the hospital. The diet requires a hospital stay both to monitor the patient’s body as they transition and to train the caregivers.

On Wednesday, we will check Connor into Children’s Mercy Hospital, get him hooked up for a 24-hour long EEG, and see what’s going on in that brain of his. Because now that he has been seizure free for two years, there’s a chance he’s outgrown his epilepsy.

After (almost) two-and-a-half years of being on the Ketogenic diet, and 3 years and 9 months of battling epilepsy, this could possibly be the last leg of our journey.

Possibly.

Now, it’s also possible that we will get Connor hooked up, and neurologists will see a brain that’s still trying to have seizures, that isn’t quite healed yet. If that’s the case, we will be on the diet for a while longer.

Or it’s possible that everything will look fine at the EEG, and we will start to wean from his medical diet, only for the seizures to return.

I know these are both possibilities, and I’ve tried to keep my hopes from soaring too high. But as Emily Dickinson so poignantly puts it, “Hope is the thing with feathers that perches in the soul.”

My feathered hope keeps trying to fly away. I mostly keep it tethered. But for just a moment, I’m going to cut the string and let it go.

Another photo from our hospital stay in February 2015. Seizure meds and having his body switch over to ketosis made Connor a tired boy. McKenna sent art work to the hospital to encourage him.

I’m going to do something that I haven’t allowed myself to do these last two-and-a-half years: Compile a list things I’m looking forward to changing once Connor goes off his diet. Sure, I’ve had these thoughts over the years, but I’ve never let myself dwell on them, and I’ve certainly never taken the time to line them all up in such a way.

But today, just days before we get to head in for our EEG, I’m going to indulge and dream of a life where we get to:

Cook together: I’ve talked about this before, but unlike many diets which involve lists of “good food” and “bad food,” Connor’s diet is all about the ratio. So say Connor wants a snack, and he’s asking for an apple. Yes, he can have apple, but only 32 grams of it, and only if he drinks 40 grams of cream at the same time. If he wants grapes, it’s 23 grams of grapes to 40 grams of cream.

Connor used to help me in the kitchen a lot, but when you have to be careful about everything you touch and put in your mouth, we’ve had to restrict him to helping mostly when we’re making his food.

Try new foods: As you can tell from above, if Connor wants to try a new kind of food, it’s a bit complicated. McKenna, our 9-year-old, loves shrimp and requested them for her birthday dinner. Connor wanted to try them. So I had to get onto the web-based program that we use to calculate Connor’s meals to all of his specific fat, protein, carb, and calorie requirements. So when he wanted to try shrimp, I had to log on, create a meal for him, get approval from our dietitians, and then make it. (And, after all that, guess who discovered he doesn’t like shrimp…)

Go camping: Our kids love camping. But a lot of the joy is lost when you have to figure out how to keep cream cold the entire time. Camping is one of those things that technically we could have chosen to continue doing, but traveling with the Ketogenic diet is hard enough, even with a refrigerator, so it just wasn’t worth it to us. (Plus camping without s’mores is pretty grim.)

Serve fruit AND a vegetable with dinner: When I’ve met new people in the last few years and told them about Connor’s diet, they will frequently say something like, “I’m sure it’s hard, but I bet you all eat healthier because of it, right?”

Actually, no.

I mean, yes, we have given up a lot of family treats (more on that later) but we’ve also given up things like having both a vegetable and a fruit at dinner. Because for most of Connor’s meals, there’s only enough room in his carb allowance for a fruit or a veggie, and he loves both. None of us feel good about eating food in front of him that we know he loves.

Enjoy crafts at school: Gingerbread houses made with graham crackers and icing. Building a structure with dried spaghetti and marshmallows. Shaving cream. Sorting with skittles. It’s amazing how many activities in school involve food.

Connor’s preschool and kindergarten teachers were amazing about accommodating him as much as possible, but there are so many things that Connor can’t have or touch. One of the activities in kindergarten involved gluing Conversation hearts onto a paper plate. His teacher and I talked about it ahead of time and decided he could do it, but only if he used his gloves or she touched the candy for him.

When his teacher gave me the finished product, she said tearfully, “He smelled the hearts. It was the saddest thing.” I was so touched by her emotion. People are always commenting to us about how happy Connor is and what a good attitude he has on his diet. This is totally true, but he knows what he’s missing out on.

Let Connor help more with Eli: Connor loves to help with Eli, our 18-month-old. But we can’t let Connor share his carefully calculated and weighed out food, nor can we let him touch Eli’s lotions, Cheerios, etc.

And last week, Eli wanted to feed Connor a raisin. When Connor wouldn’t accept it, and when I told Eli that he couldn’t do that, this is how Eli (and I) felt:

Connor isn’t covering his ears because of the crying, by the way. He was acting really silly trying to cheer Eli up.

Enjoy surprise desserts: We were at the pool last week when it started lightning nearby. We had to wait about 30 minutes before we could get back in the pool. As an apology, the staff started passing out Popsicles. Connor had to

These two look out for each other.

tell them no, and McKenna did too, out of kindness to her brother.

Or a few months ago on spring break, a restaurant screwed up our order, and they brought free desserts to the table to apologize. I wish Connor could have enjoyed both of those, and many other surprise treats people have offered him the last few years.

Let Connor take communion: Grape juice and bread aren’t Keto friendly.

Have gum: Even a sugar-free stick of gum has too many carbs in it. Connor hasn’t had gum since he was four, and he doesn’t remember what it’s like. McKenna was chewing a piece at softball a few nights ago, and he asked if he could smell it. Then he said in a dreamy way, “What does it taste like, McKenna?”

Eat pastries, casseroles, soup, or other foods that are mixed together: This might be what I’m most excited about. Making a pot of soup, and all of us eating it. Or making a batch of muffins. Or a fruit salad. I don’t care if Connor throws a fit about having to eat chili, I will grin the entire time and tell him, “Sorry, buddy. This is what we’re all having for dinner tonight. Even you.”

Enjoy special family food treats: We have never been a family who ate out much or had a lot of sweets. But since February 2nd, 2015, there have been no Saturday morning doughnut runs. No ice cream on vacation. No smoothies for breakfast. No, “Well, we’re out, and it’s getting late, so let’s just grab pizza for dinner.”

Connor’s packing list for our hospital stay tomorrow: dots blanket, baby monkey, dominoes, a car, Planes, and Sprite Zero

For these reasons and so many more, we would appreciate your prayers as we go into the hospital on Wednesday. We are hopeful, but we’re also aware that this test may not turn out like we want. If that’s the case, we know we are surrounded by an encouraging and helpful community, and that we will make it through.

 

4 comments on “We are finally at two years of seizure freedom!

      1. Stephanie – in CT & had no idea. Thank you for sharing & will be praying today for Connor.

        So appreciate hearing about Connor & you and family’s journey!

        Shirley Harpool
        We have hope in Him who does above and beyond what we would ask or think.
        With Christ’s love
        Shirl

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