Archive for 'Glycogen Storage Disease'

Sanctuary in Florida!

Posted on 03. Jun, 2007 by .

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Though the trip to Florida is challenging with four children under the age of 6, we come home recharged and more prepared to continue the non-stop battle of Glycogen Storage Disease. As my wife has mentioned in the previous post, we have learned and gained experience that helps us travel the country with our little [...]

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Florida Trip Tips and Tricks (try saying that 10 times fast)

Posted on 01. Jun, 2007 by .

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We just got back from seeing Dr. Weinstein at Shand’s Hospital/ Univerisity of Florida in Gainesville. Last year just getting there was extremely difficult. Anything that could go wrong, did. This year was incredibly smoother, mostly due to the extra set of hands AKA Aunt Bonnie (we will NEVER be able to thank her enough) [...]

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Bloodless Glucometer

Posted on 07. May, 2007 by .

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CNN just wrote an article on a new device that can test blood sugar without pricking the finger! Apparently the device penetrates the skin with near-infared rays eliminating the need for an actual drop of blood. Of the five clinical studies already performed, the new device has tested 85% accurate, whereas a glucometer has an [...]

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Medic- Alert Service Dogs

Posted on 30. Apr, 2007 by .

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Last year when my boys were staying at Shand’s Hospital/ University of Florida, our favorite physician mentioned they had some Malteagles (a maltese/ beagle) that needed a good home. We like dogs, but with (at the time) three small boys with a chronic medical disease, we felt it best to not even consider it. However, [...]

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Emergency Preparation

Posted on 20. Apr, 2007 by .

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What if there was another tragedy like 9/11? Another natural disaster like Hurricaine Katrina? How would we be able to leave without any notice? It’s important for everyone to be prepared for an emergency. It’s especially important for someone with GSD, and it’s extremely important for four boys with GSD. There are many good resources [...]

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GSD Vs. Small School Districts

Posted on 05. Apr, 2007 by .

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Our eldest son began preschool at the local elementary school (commonly referred to as head start) due to developmental delays. In the beginning of the year, I held a meeting with the school staff to discuss his Individualized Education Plan (IEP). I had NO IDEA what I was doing, and I write this post not [...]

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Idaho Parents Unlimited

Posted on 04. Apr, 2007 by .

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I came across a remarkable organization today; Idaho Parents Unlimited. We missed their conference this year, but I will make it a point to go next year. Some of the seminars look like just what we need including one related to kids with special diets in school and how to best deal with administrators in [...]

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Shaken, not stirred.

Posted on 29. Mar, 2007 by .

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I often have people ask “Cornstarch? Really? Why? How?”. So, I thought it might be nice to write a post in response. Glycogen Storage Disease type 1a kids like mine cannot regulate their own blood sugar. So we give them cornstarch every 4 hours, 24 hours a day. Even in the middle of the night. [...]

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Weird Ice Cream that’s GSD 1A Friendly

Posted on 25. Mar, 2007 by .

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I ran out of ingredients that I normally used for makign our boys “special ice cream”, so I decided to improvise and see what I could come up with. I ended up with an ice cream that had the best texture that I’ve been able to make so far. I was dissappointed with the flavor [...]

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