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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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2014 Ichthyosis Conference: Day 1

Wow! What a great day!

We arrived in Indianapolis yesterday afternoon after a 5 hour ride with some beautiful sunshine, only to have the heavens open on our heads as soon as Rachel ducked out of the car. Fortunately for the rest of us, parking was in the garage and the entry to the hotel is under a roof, so we were all spared the midday bath as we unloaded our suitcases. We chilled out in the hotel and spent an hour diving for pool toys in the awesome salt water pool. I had no idea that salt water pools were so slick on the bottom! Monkey skidded across the floor and hit his head, but luckily he wasn’t injured.

Today, I headed over to the conference War Room early in the morning with Cookie. At 9:30, no one was there quite yet, but 24 tables all loaded with overflowing boxes of creams and shampoos and beeswax greeted us. Cookie and I dove right in, cutting all the tape and removing all the shrink wrap from dozens of bottles of every imaginable product. We were about an hour and elbow-deep into boxes of eyedrops when Moureen Wenik, her daughter Saige and Jean Pickford arrived. They jumped right in with us. It took until almost noon to open everything! We had empty boxes piled four feet high in the corner! We were just finishing when the rest of the FIRST staff appeared after their morning flight.

War Room - Indianapolis Ichthyosis Conference

War Room – Indianapolis Ichthyosis Conference

Once everything was opened, everyone took reusable shopping bags and loaded each one with all the goodies. We added the conference shirts and lined them all up on the floor. I hear there are 407 people attending this conference – over 120 families!

Mo Wenik and team, filling goodie bags!

Mo Wenik and team, filling goodie bags!

About 2:30, Cookie took off with Rachel and the other kids to head back to the pool. I went up to the clinical screenings and spent the rest of my day helping families get where they needed to go. Dr. Choate’s spouse and several local medical students helped out with keeping the train running on time between keeping track of who needed to be in which room, registration, photography, and sitting in with the doctors. It was like Musical Chairs. Every 20 minutes, my alarm went off and the three of us knocked on all the doors to let everyone know they had 3 minutes to finish up. Then we’d guide everyone off to their next part of the appointment. Several late planes and some crazy traffic made this particularly challenging. It was like a quick taste of what it is like to be a doctor’s receptionist.

Erin Loring from Yale, with Drs. Craiglow, Lucky, Milstone and Choate during the pre-clinical game plan session.

Erin Loring from Yale, with Drs. Craiglow, Lucky, Milstone and Choate during the pre-clinical game plan session.

Medical resident Elizabeth Peacock with her mentor, Dr. Haggstrom

Medical resident Elizabeth Peacock with her mentor, Dr. Haggstrom

 

Finally, everyone finished. Only 30 minutes later than scheduled, which was not bad! I went down to the lobby and ran right into a bunch of old friends. Shannon and her daughter were chilling on the couch, Hunter came in and they ran into another family – Denise and her son were all grouped together right at the entrance, and many others were chatting in groups here and there. I had to get to bed so I couldn’t stay as long as I liked, as tomorrow I have to be back up on the clinical visit floor right at 7am. But I did get this great picture of Hunter, Lauren and Brian!

 

Lauren, Hunter and Brian

Lauren, Hunter and Brian

Time to CRASH!! We will try to update tomorrow!

#FIRSTNFC

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