Glycogen Storage Disease – StarchWars

Valentine Sugar-free Sugar Cookies

Posted on 10. Feb, 2010 by Jillian.

Dedicated to all of my fellow frantic GSD moms who just realized that there’s a Valentine’s Day party at school tomorrow, and they need to bake cookies for their child to decorate, just like all of the other kids…

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The Wedding

Posted on 20. Jan, 2010 by Jillian.

Saturday morning we kept pretty low key. The kids- and their parents- had a chance to play and relax a little bit from the crazy schedule.

Saturday afternoon: THE WEDDING
Oh so very fun, but a little crazy. We were fortunate enough that they post-poned the wedding a little while so we could do cornstarch right before-hand [...]

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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 the [...]

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September

Posted on 18. Jan, 2010 by Jillian.

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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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 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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