Glycogen Storage Disease – StarchWars

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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September:
Trauma/Drama 1: Mark started 1st grade, and Ethan began Kindergarten. Some people would say “Wow, your day just got easier, didn’t it?” and they’d be wrong. Now we had to pack med and lunch/ snack bags- double check them- and then run down to the school anything that we forgot to put in them- like, [...]

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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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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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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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We drove back to the hospital and valet parked (my dad said there was no way he’d walk back to the parking lot if he could valet all he wanted for $2 a day). I stopped by admissions and was able to get Mark and Ethan admitted before heading up to see Jonny and Dallin. [...]

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A few minutes after leaving the hospital we were back at the hotel and the older boys are bouncing up and down to go swimming. It’s only 6pm our time, and we used to the sun not going down until about 10pm, so the boys are wired eventhough it’s dark outside in Gainesville. We walked [...]

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