Life with The Leivas: Guilty Pleasures

Friday, December 12, 2008

Guilty Pleasures

So those of you who know me well know that I am completely obsessed with reality tv shows. I'm not at all selective, in fact, the trashier the better. Give me a reality show and I'm happy!

Since Mike has been in the field I've discovered my newest favorite guilty pleasure--reality tv online! Peter is a pretty good sleeper and at this point he is usually waking up once a night for me to nurse him. I feel slightly guilty that I'm not using this time to bond with my adorable son but really, how much bonding goes on at 4 am when I'm half asleep. Instead I've taken to bringing the laptop to bed and when Peter wakes up for his feeding I log on and catch up on my reality tv. So far this week I've watched the entire season of MTV's Real World/Road Rules Challenge "The Island". I don't know what I'm going to do when Mike gets back from the field, something tells me that he won't enjoy being woken up in the middle of the night by the drama of reality tv, but then there are always headphones :)....

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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.