Life with The Leivas: The Fair

Monday, September 15, 2008

The Fair

This weekend we made our second annual trip to the Puyallup Fair. It's crazy to think about how much has changed over the last year! During our last trip we had just arrived in Washington state, Olivia was still very much our little baby and was way too young to really enjoy the fair and I certainly wasn't pregnant! Mike hadn't even officially reported here at Ft. Lewis and we were still in vacation mode. Last year the highlight for us was the beer garden and the giant pumpkins, this year it was seeing Olivia enjoy the rides and fair food!

Olivia's first ride was the giant slide with Mike. They patiently waited in line to get their burlap sacks to slide on and then Mike and Olivia slowly walked up the 4 flights of stairs to the top of the slide (I took the most adorable pictures of this). Then when they got to the top I started filming the experience from the prime spot I'd staked out at the bottom of the line and down they came. It was adorable, Olivia had the biggest grin on her face and was waving the entire way down. I couldn't wait to show Mike the pictures and video and was so irritated to discover that the camera was broken and I didn't actually get any pictures or video. We considered letting them go again so I could get pictures but at $3/each it just wasn't practical (we do have a new baby on the way after all). Fortunately the cell phone has a good, working camera so we did get pictures of the other fair fun. Mike took Olivia on her first big girl ride. At first Olivia wasn't too sure what to think, she was very concerned with making sure the little gate was closed. But she loved it and kept trying to climb back into the ride area to go again. Olivia also went on her first ride solo and while I was worried she'd completely freak out she LOVED it! Hope you enjoy the pictures!

"Make sure that gate is locked Daddy, I dont' want to fall out!"

"More please" Olivia didn't want to leave the ride but we told her big girls don't have temper tantrums so we get the pout instead of a fit.

What's going on here? Why is that car honking at me?

I'm driving!

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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.