Life with The Leivas

Monday, March 30, 2009

Welcome to Seattle

We took advantage of the nice weather here on Sunday and got to see more of Seattle. We rode the ducks and we went to the top of the Space Needle.

Checking out the water. The tour "bus" drives through downtown Seattle and then goes into Lake Union. Olivia was a little confused to be floating on the water.

The Seattle skyline.

Seattle houseboats. Its hard to see in this picture but the "Sleepless in Seattle" house is the green one with the red trim, another house has been built in front of it.

View from the top of the Space Needle

North Carolina, the fun stuff....

So our trip to North Carolina included trips to the Duke University Medical Center and the Center for Development and Learning at the University of Chapel Hill as well as a short trip to Ft. Bragg. Obviously it wasn't a vacation and we spent more time in various hospitals than anywhere else. Despite that we were thankful that we were all together and we did make time for some fun family time as well as trips to Chick-fil-A and McAlister's Deli!

The Chapel at Duke

Two Little Monkeys Jumping on the Bed

We loved the sunshine and the warm weather!

Shopping with 2 little ones

When Olivia was an infant I remember being so excited to be able to shop at the grocery store on my own. Those days of solo shopping are long gone and now I have two little ones to keep entertained. I've discovered the best invention of all time. I don't know why I never noticed these before. The other day we stopped off at the store for just a few things when Olivia politely said "Mama please ride" and pointed at the car/cart. How could I deny her? After all she said please. I had the most enjoyable grocery shopping trip ever. We will have to work with the steering with the feet thing :)

Playing Catch Up.....

To say that I've fallen behind on my blogging is an understatement. We've been super busy with our last minute trip to North Carolina but we've been having a blast. I hope you enjoy hearing all that we've been up to.

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.