Monthly Archives: January 2013

Riding Solo

Longtime readers may note that Armand and I used to engage in “cookie nights”, where I would open a box of Soft Batch Chocolate Chip cookies, and he would systematically claim most of the cookies for himself by simply taking … Continue reading

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That’s Not What We Mean By “Seize The Day”, Armand

With all the good news, Armand’s bound to have some rough days to balance it out. Yesterday was one of them, having 6 seizures including one at school that lasted 2 minutes. He also makes new sounds that are, well, … Continue reading

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Rx for ASH

Just in case we get some parents or family members of GM1 children looking for help, I thought I’d post an updated summary of what El Jefe is currently taking daily: Treatment 3 x 100mg Miglustat (Zavesca) 1 x 600mg … Continue reading

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RSVPu (UPDATED)

We had our “exit interview” with Drs. Whitley and Utz this afternoon. We had already seen some of his tests results as early as while he was in recovery, and those levels were normal and looking good (albumin, blood glucose, … Continue reading

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Days 1 & 2 In Review

Been quiet on the blogging front because for the most part a lot of this is old hat: fly, land, hotel, Target run for food, Day 1 meeting with Drs. Whitley and Utz, Day 2 meeting with neurologist, Day 3 … Continue reading

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Notes, Quotes, and Billy Goats (Photographic Edition)

This gallery contains 8 photos.

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Notes, Quotes, and Billy Goats

There was (maybe still is, I’m not sure) a sports columnist for the local newspaper by the name of Gary Nuhn. Fairly unremarkable, sort of a homeless man’s version of Rick Reilly, he had an occasional column that he called … Continue reading

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