Glycogen Storage Disease – StarchWars

August

Posted on 18. Jan, 2010 by Jillian.

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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The End

Posted on 14. Jul, 2009 by Jillian.

After our annual photo shoot with Dr. Weinstein, Dallin started screaming bloody murder because I told him he needed to leave a motorcycle toy he’d gotten from the hospital playroom. Dr. Weinstein, of course, told him to keep it. Two months later, it’s still his favorite toy.
We hit the road and an hour and a [...]

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Day 4: Last Day at Shands- 2nd report card

Posted on 18. Jun, 2009 by Jillian.

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Day 3 Continued- including a Bonus Bad Mom Moment

Posted on 11. Jun, 2009 by Jillian.

After report card time, we had lunch, and I had my dad go back to the hotel to relax a bit without kids. By this time he was looking pretty run down. I wonder why? So, the boys had the usual fun of pushing/ pulling eachother down the halls in a wagon, going to the [...]

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Day 2: Shands hospital

Posted on 17. May, 2009 by Jillian.

Alright, bright and early the next morning, we’re off. We needed to be out the door at 7am our time in order to make it to admissions at the right time. The boys cooperated (a rare and precious novelty) and we were on our way in record time.

As many of you know, you receive a [...]

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The Locust Catchers

Posted on 18. Aug, 2007 by Jillian.

Whenever we seem plagued, there always seems to be a team of people ready to squash our personal locusts.
Our third GSD little guy has had diarrhea for a week. Our youngest little GSD one has had a stuffy nose. On Monday, when transitioning our youngest off of his feeding pump and on to eating from [...]

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Glycogen Storage Disease- What to Expect the First Year

Posted on 31. Jul, 2007 by Jillian.

Babies with GSD 1a can be a bit of a challenge. The most obvious challenge is controlling blood sugar. Each bundle of joy is different, but in general they are between 9 and 18 months before they can tolerate the magical cornstarch “medicine”. So, what do you do in the meantime?
While we were in the [...]

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Update

Posted on 13. Mar, 2007 by Jillian.

Well, our 14 month old is still in the hospital. He has the rotavirus, and we are having difficulty weaning him off the I.V. Everytime we try to gradually drop the I.V. rate, his blood sugar drops below 70 and they have to raise the I.V. rate again. My husband has stayed with him the [...]

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You know you have GSD if…. The E.R. nurse knows you by name- or at least by disease

Posted on 11. Mar, 2007 by Jillian.

Yesterday our 14 month old got sick. His “normal” friends had a bad fever, and horrible aches and pains. That’s how it started out, but after a few hours we believe his lactate levels rose too high and he began throwing up. We switched gears to giving him a slow gravity feed of one ounce [...]

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