Glycogen Storage Disease – StarchWars

2010 University of Florida Trip

Posted on 12. Apr, 2011 by Jillian.

I just realized that I never blogged about our 2010 trip to the University of Florida. To sum up, it was fabulous! Our appointments were on a Thursday to Friday, and then on a Monday to Tuesday (not even Dr. Weinstein can handle all four boys at once). Saturday and Sunday we were able to [...]

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Busy October Post #1

Posted on 20. Jan, 2010 by Jillian.

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 [...]

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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 [...]

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Jacksonville to Gainesville

Posted on 14. May, 2009 by Jillian.

Okay, we’re in Jacksonville Florida. We’re in the home stretch, right? Almost. After yet another trip to the bathroom and an elevator ride later we’re at baggage claim. We find my dad’s suitcase and two of the car seats. After some searching we find the third car seat. Eventually it dawns on us that there [...]

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