Life with The Leivas: Gingerbread House

Wednesday, December 17, 2008

Gingerbread House

I am absolutely loving staying home with Olivia. for the last year she has been in day care while I've been at work so I feel like I'm getting to know her all over again. This past weekend we built a gingerbread house from a little kit I picked up at Costco. It was the best $9 I've spent in a long time! We had an absolute blast. I put the house together and Olivia snacked and decorated. Olivia also enjoyed picking the candy decorations off the house and licking them then putting them back on. Sure our house is far from perfect but we did it together and that's what counts

1 comment:

Anonymous said...: I think this is the best gingerbread house EVER!; Wednesday, December 17, 2008 8:15:00 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.