Life with The Leivas: Growing so fast

Friday, April 30, 2010

Growing so fast

This little boy is growing so fast. I still haven't gotten his haircut, I know he could use a trim but I'm just not ready yet. I also still haven't scheduled his 18 month well-baby visit, he'll be 18 months old on May 11th. I don't want to go to the appointment, that will make it more real.

He doesn't even look like a baby anymore when he's sleeping, he looks like a big kid.
I took these pictures when I went in to wake him from his nap. When he heard the camera he peeked out of one eye, saw me and then covered his head with the blanket. I can almost hear him saying "leave me alone ma".

1 comment:

Ashley said...: Oh Laurie! Look at him! It seems like just yesterday we were doing his 6 month pics. And I was carting around tiny baby Evelyn!
My, how time flies! (oh! and Rick's scheduled to fly home on June 22! I can't believe we made it here!); Saturday, May 01, 2010 2:45:00 AM

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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.