Posts tagged with hunter-syndrome

Therapy Thursday: Neurologic Music Therapy

Posted Thursday April 14, 2011 by Melissa

Welcome to the first edition of Therapy Thursday! I decided to start...

Welcome to the first edition of Therapy Thursday! I decided to start this series for several reasons. First, we spend our entire Thursday in “therapy.” Case goes to neurologic music...

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Case in music therapy

Case’s Elaprase Treatment

Posted Saturday April 02, 2011 by Melissa

Every Thursday since July 2009, Case has traveled to Vanderbilt Children’s Hospital...

Every Thursday since July 2009, Case has traveled to Vanderbilt Children’s Hospital to receive an infusion of a drug called Elaprase. So, by now, Case has had approximately 80 infusions...

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Hospital bed sleeping

Recreation Therapy, Case style

Posted Thursday March 31, 2011 by Melissa

Being in a hospital for many days each month is almost enough...

Being in a hospital for many days each month is almost enough to drive a child (or his mother) crazy, right? Especially when that child has issues with hyperactivity, attention...

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Recreation Therapy

One Port, Two Port, Red Port, Blue Port

Posted Tuesday March 29, 2011 by Melissa

Today, Case received his 4th dose of intrathecal idursulfase or Miracase as...

Today, Case received his 4th dose of intrathecal idursulfase or Miracase as we’ve dubbed it. Now, this sounds like a smooth ordeal, but the potential for hangups exists all along...

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Mommy and Case

The Reality of Hunter Syndrome

Posted Friday March 25, 2011 by Melissa

Sometimes reading about MPS is not enough. As a friend would say,...

Sometimes reading about MPS is not enough. As a friend would say, sometimes it is little black words on a little white page. Without the living reality, it is often...

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Reality of Hunter Syndrome

Our Hunter Boys

Posted Sunday March 06, 2011 by Melissa

Who could be cuter than a bunch of our Hunter boys? I...

Who could be cuter than a bunch of our Hunter boys? I recently spoke at a conference to tell Case’s story of diagnosis and treatment and to give a face...

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What in the world is a lysosome?

Posted Monday February 07, 2011 by Melissa

ly·so·some [lahy–suh-sohm] –noun Cell Biology. a cell organelle containing enzymes that digest...

ly·so·some [lahy–suh-sohm] –noun Cell Biology. a cell organelle containing enzymes that digest particles and that disintegrate the cell after its death. Have you ever wondered what in the world is...

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