Archive for 'Glycogen Storage Disease Type 1A'

Busy October Post #1

Busy October Post #1

Posted on 20. Jan, 2010 by Jillian.

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Trauma/Drama/Excitement: We went on our first family vacation with all four of our boys.
Prep work: I made sure to pack for every conceivable medical emergency. Along with our “normal” medical supplies we accessorized with a feeding pump and bags, extra gastrostomy tubes (not just the extensions), dextrose, etc. Plus, I mapquested our route to/from the [...]

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August

August

Posted on 18. Jan, 2010 by Jillian.

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Ok, since I haven’t blogged in a few months… here’s a quick recap of what’s been going on. What we’ve done, what we’ve learned, etc.
August: Trauma/Drama of the month: Dallin (our then 2 year old) “broke his leg good”- according to the E.R. doctor- in a freak slide accident.
What we learned: ALWAYS call Dr. Weinstein. [...]

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Pumpkin Muffins from Kathy Turi

Pumpkin Muffins from Kathy Turi

Posted on 01. Dec, 2008 by Kathy Turi.

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Ingredients for 12 standard muffins
2 cups pastry flour
1/2 cup almond meal
2 teaspoons baking powder
1/8 teaspoon sea salt
1 teaspoon ground cinnamon
1/4 teaspoon allspice
1/8 teaspoon ground cloves
1 teaspoon pure vanilla extract
1 teaspoon maple flavor (Frontier brand)
1/2 cup canola oil
1/2 cup Suzanne’s Specialties Original Brown Rice Syrup
1 cup canned pumpkin (Libby’s 100% Pure Pumpkin)
1/2 cup Eden Rice & [...]

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Training the Sniffer

Posted on 05. Jul, 2008 by BMW.

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I feel bad that I haven’t posted a blog in such a long time. Our family has recently moved and with everything else going on somehow blogging got moved down a little further on the priority list. However, today I was really impressed with how our Glycogen Storage Disease helper pup in training, Luke, worked [...]

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GSD get-together in Utah

Posted on 21. Oct, 2007 by Jillian.

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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 Jillian.

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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 Jillian.

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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 Jillian.

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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 Jillian.

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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 [...]

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