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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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Here's our summary of our best and most important posts of 2012.

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Isotretinoin Packaging: It’s Not For Who?

Monkey, now eight years old, saw my packet of isotretinoin pills (also known as Accutane and other names) on the kitchen counter this weekend. He asked Jennifer, “Momma, what’s that?”

“Well, honey, take a look at the picture. What do you think it’s telling you?”

He scrunched and wrinkled his face as he thought about [...]

On Polar Vortices and Hot Water

The polar vortex is passing through Virginia, so thankfully we’re going to be warming up soon. (And no, it’s not a liberal hoax.) Temperatures near me yesterday morning dipped down to -10 F (-23 C), with the windchill even worse than that.

On Monday, Jennifer blogged about squawking in the shower and how our kids [...]

Angry Birds: Squawking in the Shower

I’ve written before about bathtime with our boys who are affected with ichthyosis, but what I didn’t mention in that article was that showering or bathing my boys usually involves a lot of complaining. The nature of the complaint has changed over the years, but they still like to complain. Sometimes loudly. Some days, I [...]

Rachel’s isotretinoin log: Week 1

I feel kind of miserable right now, but I’m not entirely how much I should be blaming isotretinoin, also known as Accutane and other names.

I’ve been taking 40 mg/day (0.6 mg/kg/day) since last Monday night, so it’s been one week since I’ve been on the drug.

My skin is starting to peel. My face [...]

Playground Trauma

So…. we are eight weeks into school. Three of my kids have teachers new to both the school and the district, so we had to go through the whole spiel back on Meet the Teacher night. The oldest one is finally at the point where he can more or less advocate for himself, especially with [...]

Some Nice Things About Ichthyosis

We’ve had a couple of long days at home dealing with some household issues, so after the kids went to sleep last night I poured myself a nice glass of wine.

I can think of few real “nice” things about ichthyosis, but it’s certainly convenient to have a jar of Aquaphor or Cetaphil in [...]

Unwelcome Attention in a Restaurant

The restaurant diners looked up from their meals and stared at Monkey and me as we raced through the restaurant. He wasn’t subtle by any stretch of the imagination — he was waving his hand up in the air hollering “Eeeeeeeyow ow ow ow OWWWWWWW!” as he wound his way through the dining area.

We [...]

“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 [...]

Epidermolytic Ichthyosis: Hands and Feet?

We’re starting a new project here, and if you have a form of epidermolytic ichthyosis, we’d like you to share with us and our readers how you take care of your hands and feet. We will collect, curate and then publish the responses on our blog here, with as much advice specific to each individual [...]

Our Bicycle Solution

Now that the kids are all school-aged, slow-moving baby bikes have gone by the wayside. Just because they have ichthyosis doesn’t mean they don’t have typical kid desires. It has been a challenge to strike the balance between keeping them safe and letting them do things with their peers. One point of conflict has been [...]