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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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“I’ll have another Baconator!”

With Rachel temporarily out of work due to the government shutdown, we’ve been joking a bit about needing to switch the children to a subsistence diet of rice and beans. Which makes contemplating the mass quantities of food our family tends to go through even more intimidating.

When Rachel was growing up, she remembers eating a Big Mac and a 20-piece chicken nugget in the car — as a mid-afternoon snack between meals. (And she still stayed skinny!) She just attributed it to having a fast metabolism, since her parents are both fairly thin.

But it turns out that ichthyosis plays a factor in this, too. In 2004, Dr. David Moskowitz and several other doctors looked at water loss in children with ichthyosis. They found that these kids lost two to four times as much water through their skin compared to unaffected people. When water evaporates, it takes heat with it, so that loss translates into a loss of around 300-400 calories every day, which is about how many calories are in a cheeseburger. So, imagine your daily meals, then throw in an extra cheeseburger, every day, just to break even.

Imagine eating an extra cheeseburger, every day. Yikes!

I have told people in the past that it wasn’t unusual for my boys to inhale a 20 ounce beverage at age two. Babysitters and daycare never believed it until they saw one of my kids suck down a 10oz sippy cup, ask for a refill, and then drain that one in a span of minutes. I’ve always packed a full sports bottle in addition to the milk they buy at school, and often I stick 2-3 snacks in their bag. Some days, they just choose one, but other days, they eat everything in sight.

Now, that extra 300 calories is just for water loss through the skin. Let’s throw a growth spurt on top of that, and add in some extra calories for the body to use to manufacture some extra skin layers. Cookie is about to turn 11, so he’s starting to hit the pre-teen growth phase. In the last few days alone, Cookie has literally come to me crying about how hungry he is. We ordered two large pizzas. He ate FIVE (extra cheese, extra sauce) slices and was still hungry. He has been filling up his cereal bowl to the top, then refilling it. He gobbled down half a rotisserie chicken at dinner the other night. (Fortunately, I had thought ahead and purchased two!)

Last week, we went through a fast food joint on our way home from a pottery class. It was late — the class gets out at 6pm, and since Momo and Cookie usually finish lunch by 11:30am, I expected them to be hungry. Usually, that means two cheeseburgers, some chicken nuggets and a small shake for Cookie. This time, he asked for bacon on the sandwich, so I got him a cheeseburger with bacon. They always are allowed to go back to the counter to order more food if they need it; I just hate throwing things away when they have a day where they don’t want to eat as much. Besides, learning to independently order, pay and count out change is a valuable skill to have.

Cookie finished his food. “I’m still hungry!” he whined. Fine, go get another sandwich. I handed him a $10 bill.

I overheard him at the counter. “I’ll have a Baconator!!”he told the cashier. And he ate the whole thing, too. Then he asked for another. This was the moment I knew childhood was over. (To recap: For that meal, he ate one cheeseburger with bacon, two Baconators and the milkshake.)

This weekend, I made eggs and toast for breakfast. I cooked 20, figuring I’d have enough to add some to fried rice for dinner. Heh. Nope. The little vultures ate all 20, we went through an entire loaf of bread, a gallon of orange juice and half a gallon of milk.

Fights over who gets the last slice of pizza have gotten so bad that Rachel has started ordering half a pizza with anchovies and mushrooms, just to ensure that there’s some left for her.

I figure the grocery bill will be astronomical in another 5 years, when I have thee teens and a pre-teen to feed. <whimper> So, what’s the cheapest way to fill up on rice and beans?

In all seriousness, our family’s a long way away from being penniless. We are fortunate to have enough savings to get through the government shutdown, but not everyone is so lucky. Hopefully the government will reopen soon. Stay tuned later on this week for some further thoughts from us about the shutdown and the effects of the sequester.

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