Life with The Leivas

Sunday, August 19, 2012

Sleeping?

This is what I found when I went into Peter's room...guess what movie he watched this weekend:)

"If you had had a nickel for every nickel that he has, you would have a lot of nickels.”
Albert Einstein

How did I miss the redesign of the nickel? I remember the quarter redesign with the stated being such a big deal. How did this one slip past me? I think I saw a new penny the other day, I'll have to be on the look out for that.

Tuesday, July 10, 2012

Fabulous Fourth

It was very strange not to have a 4 day weekend for the 4th of July, it didn't help that the 4th fell on a Wednesday. We enjoyed some fun family activities and had a blast catching up with each other.

Olivia and I at the National World War II Museum. Olivia loves the way you can switch the camera view on my phone and she loves to look at herself on the screen. I love that it makes for some adorable pictures of her!

Can you believer how big this handsome boy is?

Olivia was mesmerized by the interactive map on the floor depicting the south pacific front. I can't believe she stood still for such a long time!

Seriously how cute is he!

They were both mesmerized by the display of US Naval fleet.

Typical of most attempts of a family photo...

We can't even get 3 of us, let alone all 4 of us to look at the camera.

Peter got a special toy at the gift shop. He's slept with it nightly. It's hard not to spoil him when something so simple makes him so happy!

After a low-key afternoon at home we headed downtown to watch the fireworks. I convinced Mike to take us to a parking garage downtown along the Mississippi River so we could enjoy the show.

The parking lot was almost deserted and the kids had plenty of room to burn off some energy.

Sparklers in a parking garage may be a fire hazard, I'll have to check on that....

We had a great view!

What a show!

It was well worth the $4 we paid to park in the garage for an hour. We were safe and comfortable and we avoided the crowd!

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.