Tag Archives: miglustat

Day One

Last night was a bit of a rough night for Armand.  He threw up a bit during the evening, then woke up biting his lip during the night, followed by five of his “scary” seizures during the night (his first … 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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Ketosis, Osmosis, Halitosis,…

After last week’s adventures, Armand’s aunt (a NICU nurse) was able to help us “fix” his G-tube by performing her first “button” insertion, with no complications. We’re in the process of adjusting Armand’s feeding tube formula.  He has been on … Continue reading

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Nothin’ But A G-Tube Thang, Baby.

It’s time. Armand’s had such a decline and such a tough time over the past 6 months that we’re going ahead with plans to put him on a feeding tube. The medicines he is on, and the episodes he’s been … Continue reading

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Blessing in Disguise? (Day 2 In Review)

Today was a bit of mixed bag, and I’m still not sure how I feel about it. It started off well enough, mostly because Armand slept in pretty late — it was after 9 and breakfast was mostly ready before … Continue reading

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FDA Safety and Innovation Act (was: Creating Hope Act) signed into law today

From Yahoo: WASHINGTON, July 9, 2012 /PRNewswire-USNewswire/ — Signed by President Obama today, theU.S. Food and Drug Administration (FDA) Safety and Innovation Act includes the most groundbreaking measures for rare disease patients and their families since the Orphan Drug Act of 1983. As the long-standing … Continue reading

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Day 1 in Review

After the dystonia*-induced sleepfest that was yesterday (we finished up at 7 episodes during the day, along with a couple minor ones overnight), today was much more awake and energetic.  He started eating a great meal (some eggs, avocado, blueberries, … Continue reading

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