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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.

Neglected and Unloved

I apologize for having vanished from our forum. Our life has gotten a bit crazy since the new year. Cookie picked up a bully early in the school year (not ichthyosis-related; this kid and his two hangers-on are generally obnoxious to everyone in the class, including the teachers.) Anyway, this has caused his natural tendency to worry to turn into full-blown anxiety, so my time has been mostly offline lately.

I’m trying to spend more time in the classrooms and helping him cope with his anxiety. Here I am teaching a lesson on sound with his 5th grade class.

2014-03-28 08.30.22

This is Monkey’s Chinese dragon for their annual 2nd grade parade.
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In addition, I’ve taken on the older half of Kitty’s Girl Scout troop and they have been working on their Bronze Award since late February. This involved 2 straight weeks of counting change every night for their fundraiser – they raised $700, and most of that was pennies! This bucket holds about $350 worth. It was about 80 pounds to lift. I took it to the bank, then the girls refilled it!2014-05-01 12.03.00
Additionally, we’re working on Monkey and Momo’s reading skills. Rachel is in the middle of a big case at work, so she pretty much left me to take care of the babies – of which this blog is one!

Ichthyosis has fallen fairly low on our priority list for the moment. I’m involved with one of the FIRST planning committees and still active on Facebook, although less so lately. We took the train up to see Dr. Choate and his team in February, and we’re really looking forward to the conference in June. I really was planning to write about a bunch of stuff, but I keep finding myself asleep on the couch at 2am instead of blogging after the kids go to bed.

After we got back from Yale, we hosted a get-together for affected families. It was one of the many flooding weekends so several people ended up unable to make the trip, but we had a great time with our friends Darcie (that’s her son making his mom buy cookies off my daughter), new friends Victoria and Robert and their sweet baby, and our friend SooAnn, who brought one of her boys along.

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Rachel’s mom and dad came for Easter. They were here for a week over Spring Break. We went to Monticello for a day and had fun on a nice, cool mountain spring day. Here’s a picture of the whole family from Easter.

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We got Momo his own version of Monkey’s awesome bike a few weeks ago. He’s not quite able to push the pedals that well yet. He needs another inch or two, but he’s excited!

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Rachel had a birthday. She wanted a Rainbow Dash cake. The middle is marbled rainbow, although I suck at drawing anything with frosting. She loved that I even attempted it. Kitty had a birthday, too, but her friends are in all the pictures and I need to get permission to share them.

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She’s still on isotretinoin and not having problems with side effects, but her skin has gotten pretty fragile and she now leaves a trail of flakes everywhere. On the plus side, she can walk and her bath routine is a lot shorter.

Two weeks ago, we went camping. 4 of my scouts went along. Here’s Kitty trying out archery and one of the other Juniors waiting her turn. They also got to canoe and we met a poisonous snake living under the woodpile by our campfire. It made for an exciting weekend!

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Finally, this past weekend, I took Cookie out to the caves along Skyline Drive. We walked through a huge garden maze and into two different caverns. He asked me to take a picture of this spot in the caves in particular. He told me that it looks just like the giant organ at Yale in Woolsey Hall, where he got to hear Mahler 2 when we were up there in February.

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Whew! So, that’s what’s up with us. Anything interesting going on in your corner of the world?

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