Life with The Leivas: Weekend Highlights

Sunday, February 14, 2010

Weekend Highlights

Mike has a 4 day weekend so we get a weekend "squared"
Olivia is feeling great after a change in her antibiotic
I got a snuggie
Peter can drink out of a straw
Mike and I had a fondue date after the kids went to bed
Valentines morning heart shaped french toast
Sleeping in
Catching up on all of our recorded shows
Finally watching "The Hangover" and it really was every bit as funny as everyone said it was

1 comment:

Unknown said...: I love that you added that you got a snuggie.

Kris asked me if I wanted a hoddie footie for Valentines day.; Monday, February 15, 2010 10:25:00 PM

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.