Life with The Leivas

Monday, July 22, 2013

Big Boy School

In the fall Peter will start preschool at the Catholic grade school right next door to campus. They had a uniform swap last week and Mike picked up some uniforms. Peter is so excited to go to "Big Boy" school.

Friday, July 19, 2013

To Blog or Not to Blog

I've taken a nice loooooong extended break from the blog. Our move to New Orleans brought lots of changes but one thing that it did not bring was extra time. Over the last year or so blogging hasn't been a priority so I haven't made time for it. I have seriously considered giving it all up entirely. But I've realized what I miss most about it is that when I don't blog I don't get the chance to reflect much on what's going on with us because we're always rushing onto the next thing. So I'm going to give it one more week and then we'll see what happens.

It's Friday. I thought this picture of Olivia enjoying the swing was particularly appropriate. Don't we all feel like this come Friday.

And we have a bag full of jalapeños left over from Mike's last trip to the grocery store (he excels at purchasing things in bulk) and I can't wait to make these this weekend:) http://thepioneerwoman.com/cooking/2013/07/jalapeno-quesadillas/

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.