Glycogen Storage Disease and the Subtleties of the Brain

Posted on 11. Nov, 2007 by .

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Our family is now beginning to dive deep into the mysterious realm of the brain. Since our older boys were diagnosed with GSD 1A there has been an underlying concern for the well-being and health of their brains. It was apparent that due to multiple exposures to hypoglycemia there had been a delay and possible [...]

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When Life by the Clock “falls back”

Posted on 04. Nov, 2007 by .

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Daylight savings time kicked in today and we were supposed to get an extra hour of sleep this morning. Ya, right. As if kids like to sleep in on any day other than a school day. We also woke up wondering what on earth to do about switching cornstarch schedules. Somehow it crept up on [...]

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Halloween- The Scariest Night of the Year

Posted on 31. Oct, 2007 by .

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Most people associate the “scary” side of Halloween with freaky masks and haunted houses. For us, it’s ALL the candy. Last year, we simply avoided Halloween. We let the kids dress up, took them to Grammy’s house for a bit, and came home. Nothing uncontrollable. After the GSD conference, we realized that we need to [...]

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Amazing GSD Conference

Posted on 29. Oct, 2007 by .

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We just got back from our trip to Utah’s first, and hopefully annual, GSD conference. It was incredible! We came back with pictures, memories, videos and more. We feel exhausted and energized at the same time. There is so much to blog about that we’ll have to divide it into sections. So, this post will [...]

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GSD get-together in Utah

Posted on 21. Oct, 2007 by .

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This Friday we are driving to Utah to meet others (and their families) with GSD for the first time. The Make a Wish Foundation in Murray, Utah is graciously allowing us to use a conference room to meet in. There will be several families with various types of GSD as well as our favorite physician [...]

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Teaching Dallin the Ways of the Starch

Posted on 09. Oct, 2007 by .

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It’s official, Dallin is 9 months old and has begun cornstarch! We spoke with Dr. Weinstein today, and he encouraged us to start giving Dallin 5 grams of cornstarch in 2.5 oz. of Prosobee- and see how his blood sugar handles it. We started out testing him every 15 minutes, then every half hour, and [...]

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Luke Vs. Mr. Roboto- a dog update

Posted on 05. Oct, 2007 by .

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Our son Ethan just had his fourth birthday, and received a thoughtful and creative gift from his “girlfriend” Karlee. She understands that we are training a dog that will (hopefully) be able to help the boys when they get sick. So, she built him an awesome robot out of tin cans- in case Luke doesn’t [...]

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How do You Wake Up?

Posted on 13. Sep, 2007 by .

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I think most GSD parents who are responsible for all or most of the night time cornstarches have a constant subconscious fear of sleeping through the alarm. I’ve even known a certain Aunt Bonnie who, after accompanying us to Florida, woke up in a cold sweat terrified that she missed giving someone their 2am. This [...]

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New GSD Networking Website

Posted on 08. Sep, 2007 by .

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We’ve been wanting to start a networking website. We finally got something basic going at http://www.gsdlife.org This may turn out to be a great place to share experiences with all types of Glycogen Storage Disease in a more private environment. There’s a forum for discussions, a place for individual blogs (a journal of entries like [...]

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