Glycogen Storage Disease – StarchWars

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 3: Shands Hospital- the report card

Posted on 30. May, 2009 by Jillian.

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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Back to the Hotel

Posted on 25. May, 2009 by Jillian.

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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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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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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The flight

Posted on 13. May, 2009 by Jillian.

We arrive at the airport. Take out all four car seats (did you know it’s $10 per day per seat to rent them with your car???) and load up all 12 of our suitcases and bags onto our stroller that we’ll be taking with us. At least we can check the car seats.

Ben: “Wow honey, [...]

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Florida Trip 2009

Posted on 13. May, 2009 by Jillian.

Okay, we got back from the Glycogen Storage Disease Program at the University of Florida LATE Saturday night. As always, it was interesting getting there, inspiring talking to Dr. Weinstein, and we left with a list of new things to do and with a much easier way of taking care of our four GSD 1a [...]

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Cornstarch mix-up

Posted on 25. Apr, 2009 by Jillian.

My sister-in-law just told me a little story I’d like to share…. Mostly because I’m procrastinating all the packing/ planning I should be doing for Florida right now.
As many of you know, you can buy Argo cornstarch in pretty big 2+ pound plastic containers. The problem is we go through several of these a week. [...]

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GSD 1a Friendly Crepe Recipe

Posted on 27. Mar, 2009 by Jillian.

4 eggs
1/2 tsp salt
2 cups flour
2  1/4 cups unsweetened soy milk
1/4 cup oil
1 tsp sugar (I’ll sometimes use Splenda, or omit sugar altogether)
Combine eggs and salt. Gradually add flour alternately with milk, beating until smooth. Beat in oil and sugar. Refrigerate batter at least 1 hour. Cook.

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