Life with The Leivas

Sunday, December 30, 2012

Disney Days

One of the biggest perks about both Mike and I working on college campuses is the extended break between Christmas and New Years. We took full advantage of the extra shared vacation time and headed to Walt Disney World. Happiest Place on Earth.

Friday, December 21, 2012

She Stole The Show

Music is a big part of the curriculum at Olivia's school. The music teacher put together an amazing music video featuring the talents and skills of all the students but it's a large file and I'm not sure how to share it here.

We may be a little biased but we think she stole the show. About 10 seconds into the performance Olivia looked up, realized she had an audience and there was no turning back.

Thursday, December 13, 2012

Art on display

I love that the fridge is covered with artwork that the kids bring home from school. I hoard their precious projects. Seriously, there is a huge plastic under-the-bed storage box full of their projects under our bed. I can't bring myself to get rid of the stuff.

This beauty of a project came home with Olivia from school. I can't even begin to describe how much I love it! You can see how they are building on her existing skills to reach her new learning objectives. Olivia loves it too and I know she is proud to see her work on display!

Wednesday, December 12, 2012

Cheesy School Christmas Photo

The give-me-a-big-smile-then-you-can-go-back-to-playing-with-your-friends Cheesy school photo. I love it! And we are all really enjoying this Christmas season with Peter it's such a magical time of year. Seeing it through His eyes makes me love this time of year even more!

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.