Malteagles, Malteagles, Malteagles

Posted on 19. Jul, 2007 by Jillian.

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Malteagle pictures
Some are so cute, some are so ugly they’re cute, but either way, we love malteagles. These photos were taken of the puppies bred specifically for helping to find a cure for Glycogen Storage Disease. Dot (mom) was a carrier, given to Dr. Weinstein by Duke University. Last December she had darling little puppies- [...]

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Glycogen Storage Disease Get-Together in the West

Posted on 12. Jul, 2007 by Jillian.

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At our last visit to Florida and Dr. Weinstein, he mentioned we should try to find a way for our boys to meet others affected by Glycogen Storage Disease. Since most GSD kids in the U.S. seem to be in the east, it’s no wonder that so are most of the conferences. As far as [...]

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The School is “Fixed”

Posted on 18. Jun, 2007 by Jillian.

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Anyone who has read previous posts on Starchwars may remember the difficulty we have been having trying to get our oldest son appropriate services at his public school. For him, this would include an aide assigned specifically to him and trained to recognize and treat hypoglycemia as well as administer his cornstarch “medicine”. The school [...]

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Sanctuary in Florida!

Posted on 03. Jun, 2007 by BMW.

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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 Jillian.

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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 Jillian.

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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 Jillian.

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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 Jillian.

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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 Jillian.

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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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