Thursday, May 27, 2010

The Two-Week Cheesecake Diversion. Also, The Donut Incident

Sebastian's little sister, Alexandra, just turned One.  In anticipation of some low-key, high-sugar festivities, Vanessa and I set about creating a cheesecake for Sebastian to enjoy while the rest of us were eating our way into a collective, cupcake-induced, sugar coma.

During my little mini-break from blogging, we've been busy recipe testing super-fattening, albeit sugar-free cheesecakes, just about every day.  We only have time to make one experiment per day, because Vanessa and I have had to run five or six extra miles in the afternoons to balance out the 28g of fat we've been consuming with each cheesecake attempt.  Alright, we haven't actually been doing the running, but we did discuss at length what a good idea it would be.  Thankfully, we found a recipe that worked; we can now go back to eating fruit.

My obsession with creating special occasion-appropriate recipes for Sebastian began while he was in pre-preschool at the very wonderful UCLA Early Intervention program.  It was Sebastian's first experience in a classroom: overwhelming at times, but generally great.  This is kind of an unfortunate story, for which I absolutely don't hold his totally lovely teachers accountable, but nonetheless, it was a lesson for me (and probably them too).

On occasion, the teachers would take the class of pre-preschoolers (aged 18 months-3 years) on mini "field trips" around Westwood Village, in the eight-seater wagon painted to look like a school bus.  Insanely cute.  One day, the teachers planned to take the class to the new Trader Joe's on Glendon, but must have run short on time.  They got about as far as Stan's Donuts, a beloved Westwood Village fixture, which is several blocks closer to school.  Stan's was so nice about the impromptu visit; each of the kids got a delicious donut.

Except for Sebastian.

His teachers hadn't planned for the stop at Stan's, much less a group snack.  Sebastian was so little then, just over two years old, and probably didn't fully grasp what happened.  To him, everyone on their little wagon-bus got something to eat--something they really liked--but he didn't.  I was pregnant with Alex at the time, so that might account for my reaction, but when his teacher explained what happened (with the most heartrending apology) I instantly broke into tears.  Poor Sebastian.  He had no idea what had happened, except that everyone else was given something to eat that made them happy.  My heart broke with what I imagined to be his first confused awareness of food deprivation.  Sebastian had started the diet so young, he was really too little to miss foods he had only just started to enjoy.  Until then.

Steven and I refer to this as The Donut Incident.  His teachers were incredibly apologetic that they didn't properly prepare by bringing something for Sebastian to eat.  At the time,  Sebastian was (as he still is), functionally non-verbal.  To be fair, I would never have known, had his teachers not told me what happened, with their sincere apologies.  We don't blame them for their honest mistake, but rather, use this as an important lesson: we have to think ahead and prepare (as well as possible) for the situations Sebastian will experience in school and in life.  I've spent days trying to make sugar-free, blue jello in anticipation of a particular food/sensory lesson around the fourth of July.   Same for Valentine's Day, St. Patrick's Day and Christmas.  It takes a ton of planning to make sure that Sebastian has something comparable to whatever is happening in class.

This brings us back home, to Alexandra's first birthday.  We had a quiet celebration, worthy of a one-year old.  Both kids got birthday "cake."  For Alex, a cupcake was dessert.  For Sebastian, the cheesecake with fresh strawberries was his entire dinner.  Still, Sebastian was able to participate in the celebration.  That's what matters.


Vanessa made at least eight variations of (single-portion) cheesecakes over the last week and a half.  What a trooper.  Every person who came through this house (except Sebastian) was forced to try the cheesecakes and review.  Too buttery? What about the texture? Too creamy?  How is the flavor?  Too much vanilla?  Maybe we try chocolate?  

We've been slightly obsessed.  We don't want to give Sebastian anything we wouldn't eat (if we could afford to consume 28g of fat per meal and still be able to clear a standard doorway).  While we were originally looking for a cake that Sebastian could eat when Alex had her birthday cake, it became a mission to find a self-contained (no cream drink) meal he would love AND we could be sure he would finish at school.  Managing the diet when you aren't present for the consumption of meals is an entirely separate post, along with links to anti-anxiety strategies.  In the meantime...

Here is the final product, which we now send to school as breakfast, after Sebastian tried and liked it on Alex's birthday.  He gets 30g of fresh strawberries on top.  How fantastic.

The tricky thing about ketogenic recipes is that everyone has different fat, protein and carb numbers, even if the ratio is the same.  So when you use keto recipes, you always have to adapt them to your child's specifically-calibrated numbers.  Unlike your most reliable, conventional recipes, there's no guarantee that a ketogenic recipe will taste good once you try to fit it into your child's nutritional parameters.  That part comes with trial and error; there's no way around it.

In the last two years, Sebastian has been on every ratio between 4:1 and 2:1.  To provide some perspective, at his current 2.5:1 ratio, he still only gets 4.34 grams of carbs per meal (a total of 15g of carbohydrates per day, including snacks).  But there was a time (and a ratio) when he only got half that much.  Back in the days of 4:1, Sebastian's meals were impossibly small, even for a two year old.

I have a lot of shelved recipes that don't work anymore, and many I've been able to adapt to his current ratio.  When he was on a higher ratio, I used more casserole-type dishes, because I tried to "bake the fat" into the tiny, tiny portions of food.  Now that Sebastian is on a lower ratio, he gets a decent amount of fresh vegetables and fruit, which we cut in ways to both accommodate and challenge his feeding issues.

But I digress.

The non-sugar sweetener was a key component of the cheesecake.  I love liquid Stevia flavorings.  I usually pick them up at Whole Foods, but you can find them on the internet.  I prefer the Sweet Leaf brand, because I can use just two or three drops in Sebastian's cream drinks and they aren't too thick. Though they are $14.99 each, the bottles do last for months.  Sebastian gets most of his meds in his cream drinks; a few drops of Stevia flavoring effectively masks any medicinal taste.

Cheesecake with Fresh Strawberries (2.5:1)

73g Whole Foods 365 Brand cream cheese
12g Egg (raw, mixed well)
4g 36% heavy cream
2g butter
2g canola oil
3 drops Vanilla Stevia
2 drops Chocolate Stevia
30g fresh strawberries (diced)

Bake at 350 for 25 minutes or until sufficiently brown on top.  Cool.  Add strawberries just before serving.


Wednesday, May 12, 2010

The New Normal

A month after Sebastian's first birthday, our pediatrician dropped a bomb on us: Sebastian has "a severe, global, developmental delay and will probably need special assistance all of his life."

Um, WHAT?  

I glibly asked, "How do you know? What are we talking about: remedial reading or he's going to live with us for the rest of his life?" She didn't directly respond, but it was clear she was suggesting the latter. That was the first and last time I asked this sort of question.  General speculation is, frankly, useless.

Steven and I had asked for this special appointment to see the pediatrician because he wasn't very mobile yet; suddenly she's sending us for genetic testing and talking about the likelihood of mental retardation.  [A brief note here: Sebastian was a healthy kid who had only needed to see his pediatrician for well-baby check-ups.  I'll reserve the outrage about the doctor completely missing his delays and seizures for a separate post.] Pardon my language, but it was like a fucking mental earthquake.  My mind was breaking into pieces with the shock of the news.

Standing in the parking lot of the pediatrician's office, reeling from her prognosis, I had a thought: you don't wish for your child to have a (merely) normal life until that isn't an option.  Everything we had ever planned or dreamed about our life, from the day we found out I was pregnant to that moment, seemed no longer possible.  The future seemed so unclear I couldn't envision anything beyond driving home.

That was September 7, 2007.  Since that day, we have done many, many tests, tried loads of medications in various combinations, and done countless therapies.  Sebastian has a vast array of challenges.  If you're still with me and you have the time, click the link for a summary of what he's currently dealing with.  Sebastian's brain remains a mystery; we have no idea why it functions as it does.  But, it quickly became apparent that, though Sebastian's development may not progress organically like a typical child, he has a huge capacity to learn with the right instruction.  The end of the world was no longer near.

People frequently ask us two questions when they initially hear about Sebastian.  The first is always: Do we know why this happened?  No, we don't, but it's not for lack of trying.  I certainly burned up the internet, bought books and did my best House differential to figure out the cause.  Like so many kids, Sebastian's challenges are idiopathic.  After his genetic and metabolic tests came back negative and normal, and his MRI and PET scans were normal, we simply had to focus on What To Do Now.

The second question is often:  What do "they" say will happen?  They--the doctors and experts--don't know.  How could they?  How does anyone know what will happen with his kid?  I feel pretty confident that, at 16, Sebastian won't be getting high and stealing cars.  But if he is, I think we can all agree, his therapies will have been pretty damn effective.  Instead of abstract worrying about Sebastian's future potential, we're focused on tangible ways to improve Sebastian's participation in his world now.

Occasionally, we still do tests when it might inform the utility of a potential treatment.  We constantly look for new types of therapies to approach Sebastian's development.  There have been plenty of setbacks, failed medications, ineffective therapies, new challenges uncovered.  When a treatment doesn't work, we cross it off the list and move on to the next.  It's how we got to a lot of his current therapies and on the ketogenic diet.  As long as there is a list, there is opportunity.

With two small kids, we do the usual stuff: go to pools and parks and out to restaurants.  We travel with the kids on road trips and long flights.  Like all parents, we continue to figure it out as we go along.  Because of Sebastian, Steven and I are more more resourceful and creative parents; we are more generous and grateful human beings.  Our life is complicated, but far from tragic.

Tuesday, May 4, 2010

Assembly Required

Ever notice how the cooking segments on TV always make the preparation of the dish look effortless?  Fresh food is perfectly prepared for the camera in neat little glass bowls.  With the ingredients ready ahead of time, the host can casually take a pinch of this and a pinch of that. A gourmet dish appears misleadingly simple, easily prepared while casually making small talk with a studio audience on national television.

Now try that at home.  I can't make a peanut butter and jelly sandwich without at least one of the dogs and one of the kids trying to get in on the action.  We are fortunate enough to have breathtakingly amazing help with the kids (Vanessa deserves her own post, coming soon), but we also have a lot therapists and other people in and out all day.  There is rarely a quiet moment to concentrate on regular cooking, much less weighing out food to the gram.

But the morning shows have got it right: the airtime should be dedicated for the cooking, the prep should be done whenever, off camera.  For me, meal time is essentially "showtime," with a small window of opportunity to get the food on the table before the kids fall apart, the food falls on the floor and we're all off schedule.  

I decided to save meals that needed to be formally "cooked" for special occasions.  For the Everyday, we're all about assembly.  I steal some time after the kids go to bed, or Vanessa and I do the steaming and chopping whenever one of us has two hands free- while the baby is napping, Sebastian is in school or a therapist is here.

Everything for Sebastian is stored in containers labeled with blue painter's tape (it comes off easily in the sink or dishwasher, but stays on in the fridge).  It's not that this food is off-limits to everyone else.  But anything not marked with blue tape is off-limits for Sebastian's meals.  This is his dedicated shelf in our fridge:

We simply check what we have, choose a meal, pull what we need, weigh, and season.  VoilĂ .

Knowing how much to steam and how to prepare the food ahead of time is just about knowing your recipes and practice.  Vanessa and I know what the meals we've created look like, so we'll dice and julienne red pepper, but cucumbers and celery are always cubed.  Apples and avocados are prepared on the spot or they brown.  There aren't a ton of green beans in our recipes, usually about 15g per meal.  We'll only steam about 75g every week, assuming we might use green beans in about five or six meals over that period.  We might steam more if we plan to use some for Sebastian's little sister, Alexandra.

Since Sebastian also has significant feeding issues, we have to balance foods that are easy enough for him to eat (so he doesn't run out of happens) with foods that are crunchy and challenging, forcing him to practice different chewing motions.  We spend a good amount of time changing and refining recipes based on how the eating process goes.

Anyone who can read a recipe and use the food scale can make Sebastian's dinner.  I can be a little bit of a control freak about his diet (Steven would challenge that as an understatement), but the system works for us.  When he's home, Steven often makes Sebastian's meals, and he likes to set out all the ingredient containers before starting, much like they do on television.  I think it secretly makes him feel like Matt Lauer.

Monday, May 3, 2010

Cook. Weigh. Eat.

We knew the hype: the Ketogenic Diet is, by every measure, a huge amount of work.  Compared with the ease of taking medication, this rigid, medically-supervised, therapeutic diet, is not for everyone.  If the diet controls a child's seizures, it's best to continue for two or more years. Hoping for such success, but having no real idea what we were getting into, we committed for the long haul.  Should I mention Steven and I eloped seven years ago?  I'm sensing a pattern.

Once we got home, it was Game On.  I was eager to deal with two issues right away.  The first was to improve on the Bowl of Mayonnaise with Dash of Chicken meal.  The second was to speed this process up.  At the rate I was preparing the meals, all I did was cook-weigh-eat, cook-weigh-eat.  Back then, Sebastian was my only child and only job.  As I cleaned up one meal and started weighing out the next, I wondered how people managed to do anything else in life besides this diet.  One day I might want to leave the house.

I started burning up the Keto Calculator, the software that makes it all possible.  Among other things, it's a huge database of brand-specific food nutrition facts, categorized into Carbohydrates, Fats, Proteins, and Miscellaneous.  To create a meal, you click on the category, scroll through the foods and add your selection. Once you have assembled your ingredient list, the quantum physics begins: calculating the amount of each ingredient while balancing the rigid parameters of your child's ratio with conventional notions of a palatable meal.

Sebastian is on a 2.5:1 ratio.  Each meal is about 292 calories,  27.52g of fat, 6.67g of protein and 4.34g of carbohydrates. He has over a hundred meals now in the Keto Calculator, and each one is broken down like this.  I spent so many late nights working on recipes, trying to bend these rigid numbers into something delicious...I might as well have been working on thermodynamics.

Asparagus, Bacon and Feta (2.5:1)
For this meal, I weigh out the tofu noodles first. Chop up fresh tomatoes, the steamed asparagus and two slices of crisp bacon.  Add to noodles.  The butter and feta go on top so they melt over the rest of the ingredients.  Season with salt, pepper and a little dried basil.  Warm in microwave 20 seconds.  Fits in a 1 cup bowl.

For dessert, I mix the cream and coconut oil into a shake and flavor with a few drops of chocolate flavored Stevia.

Prep and cooking time: about 7 minutes, leaving us plenty of time to play outside after lunch.