Life with The Leivas: Austin Trip

Monday, August 11, 2008

Austin Trip

I found out a couple weeks ago that I would have to go to Austin for a conference for work. The conference was Monday-Wednesday so Olivia and I took advantage of the opportunity and decided to spend the weekend with my parents in Bellville at LexStone Ranch. On Friday afternoon Olivia and I flew to Austin where my mom and Amy picked us up from the airport. We spent the weekend with them and then I headed to Austin for the conference while Olivia is enjoying some extra time with her grandparents and Aunt Amy. I know that Olivia is having a great time and I'm really glad that she's getting the opportunity to spend more time alone with them. I'm enjoying the conference but it is definitely weird being all alone. I can't remember the last time I really was all alone, it must have been before Olivia was born while Mike was deployed.

This evening I sat with one of my colleagues from work and we watched Austin's famous Congress Street Bats. I'm staying at the Hyatt which is featured in the picture below.

No comments:

Post a Comment

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.