Life with The Leivas: The big T-W-O

Monday, July 21, 2008

The big T-W-O

I can't believe that Olivia is already two years old! We were in Hawaii on her actual birthday so we celebrated this past weekend. We had some friends over for birthday cake on Saturday then we took Olivia to Charlie's Safari to play on their giant inflatables on Sunday.

This weekend we also converted Olivia's crib into a toddler bed and so far she's doing great! I was really hesitant to move her out of her crib but Olivia seems very proud of her big girl bed. She climbs into her bed but so far I don't think that she's discovered that she can climb out all by herself too. We'll see how long that lasts.

1 comment:

Elena said...: That is very exciting that she is now in a big girl bed. And I don't see her not climbing out lasting very long. It didn't with Kyle.

Looks like you had a great time. I can't believe that our little babies are now two. It seems like just yesterday that we had them.
Happy Belated Birthday Olivia.; Monday, July 21, 2008 6:35:00 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.