Life with The Leivas

Monday, December 10, 2012

Monday on the Mend

Olivia's had a cold over the weekend so we laid pretty low. Despite daily power naps with Mommy she had such a nasty cough that she wasn't able to sleep well and didn't get much sleep. Olivia woke up giggling VERY early Monday morning but then this happened on the way to school...at least she arrived at school well rested. Glad she's on the mend!

It's not Really Christmas Until…

You're fully decorated Christmas tree falls over.

Friday, December 7, 2012

My Sweet Girl

Olivia is home sick from school today. I'm loving the extra cuddle time with her! I'n so happy that I'm able to work from home today so I can be here with Olivia. Love my sweet girl.

Wednesday, December 5, 2012

Yellow stripe

Peter is the very proud recipient of a yellow stripe karate belt. So proud of my little man!

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.