Life with The Leivas: Happy Birthday America!

Tuesday, July 6, 2010

Happy Birthday America!

We started with a cake (and even sang "Happy Birthday"). Olivia loved the singing and it was good practice for her birthday coming up this week. She's feeling much better!

Daddy staged this photo of Olivia and Peter picking their noses at the same time. Of course my kids would NEVER pick their noses! How do you get toddlers to stop doing this!?!

We headed to Ft. Bragg to watch the fireworks. There were supposed to be over 45,000 people at Ft. Bragg watching the fireworks but Mike found a great spot for us to watch them. We were well away from the crowds! We set up shop in an old fenced in baseball field just steps from where we'd parked the car.

The kids LOVED running in the big open field and I loved that it was totally fenced in!

Waiting for the fireworks.

Thanks to our weird schedule the last couple of days we were all wide awake even though the fireworks didn't start until 10pm! Olivia was memorized by the fireworks and Peter loved them. I was worried he would be a little scared with all the noise but pointed and "ohhed" and "ahhed". The blue fireworks were his favorites, he clapped for those.

Happy Birthday America!

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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.