So, it's been a month since I have posted. I know, I know. What is the deal!? Life sometimes just gets crazy all at once, don't you think! This time happened to all be good crazy. We spent about a week in Chicago at an Ichthyosis conference. If you don't know, Mason has a genetic skin condition called Lamellar Ichthyosis. It's extremely rare and there is an organization that is out there to support this 'community' called F.I.R.S.T. www.scalyskin.org They are so great. We got together with other families from all over the country and world as a support. We had such a great time.
Spencer's sister Karrie and her family live nearby where we were so we were able to spend time at their house. It was so much fun.
Immediately following our return home we hosted the 2nd Family reunion for Spencer's family. We had 28 people here for 6 days! It was surprising that it wasn't a whole lot more crowded around here~ We had people from everywhere! We had a family Olympics, and a family talent show that everyone had to participate in! It was so much fun.
After that Ethan and I went on our annual 'mom and Ethan' time to Lake Powell. Again, so much fun. Ethan was the only kid there. There were 6 adults to him. He didn't much care however, Lake Powell is his favorite place in the world. He was giddy from the time we rounded the corner and could catch our first glimpse of the Lake until we got home. He still thinks that we are going back next week. I don't have the heart to explain that one to him quite yet. He was in the water every second of the day. He recruited everyone of us to accompany him, whether we got in the water or not! He went on every hike, and had 3 requests of places he had to visit while we were there: "the Indian houses, Shell Mountain, and Volcano Rock." Luckily we knew what he was referring to and were able to see everything and then some.
Now we are home, recovering from our month of fun! I've heard that it takes you just as long to recover from a vacation as you were gone. I'm in big fat trouble if that's the case!
11 years ago
1 comment:
It is interesting to know of others that are carriers of the genes that cause ichthyosis. My late daughter and current sons have ichthyosis and I am a native of Utah. I belive that there is a genetic link to ichthyosis and the utah population but am in preliminary investigations.
I would like to have further contact with you should I come across something that cracks the case..
I wish your family the best of luck.
If you ever need anyone to talk to just email me at nathanolsen@yahoo.com
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