Life with The Leivas: Wake up Wivey

Monday, January 7, 2013

Wake up Wivey

One of our nicknames for Olivia is Livey but Peter has trouble pronouncing the "L" so he pronounces it wiv-ey. Peter is our predictable-early to bed-early to rise child. He falls asleep between 7:30 and 8:00 p.m. like clockwork and he wakes up between 5:50 and 6:20 am. Every. Single. Morning.

Olivia has a much less structured sleep schedule (yet another symptom of Sanfilippo Syndrome). Last night she fell asleep around 10:30 and was still fast asleep at 7 am. Peter got to wake her up so we could get ready for school. He stole the covers, tickled the toes, gave her butterfly kisses, and when all else failed he pulled out a superhero mask and proceeded to shout things like "yoohoo", "to Infanity and beyond", and "cock-doodle-doo". Rise and shine sweet girl, no rest for the weary around here.

1 comment:

Unknown said...: Did I mention I love this post?; Tuesday, January 08, 2013 11:30:00 PM

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MPS/Sanfilippo Syndrome

In October, 2008 Olivia was disgnosed with MPS III or Sanfilippo Syndrome, type B. MPS stands for: Mucopolysaccharidoses. It is a genetic lysosomal storage disease (LSD) caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials.

Babies and young children with Sanfilippo Syndrome appear normal, but symptoms begin to appear with age as more and GAGs build up in the cells of the body. There are 3 stages to the disease. Stage 1 the child begins to lag behind peers and begins to display difficult behaviors. Stage 2 the child losing his/her language, becomes hyperactive, chews on everything, and has sleeping difficulties. Stage 3 the child slows down, becomes dependant for all mobility and loses the ability to chew/swallow. There is no treatment or cure for Sanfilippo. Life expectancy varies.