Life with The Leivas: Week in Review

Sunday, August 1, 2010

Week in Review

I know I haven't posted in a while. We've been very busy counting our blessings around here. We've all been healthy and happy. We started the week with a trip to Build-A-Bear. Olivia was given a gift certificate by her fabulous Godfather and now that we are officially allowed to be in crowded public spaces we were thrilled to head to the mall! Olivia and Peter both enjoyed picking out their new fluffy friends. Olivia chose a rabbit and Peter chose a dog. The kids aren't old enough to really get into the Build-A-Bear experience with the outfits and accessories but they did love picking out their animals and stomping on the pedal to stuff them.

We had a busy week getting back into the swing of things with occupational, physical, and speech therapy. Olivia and Peter were really happy to be home and playing with their toys, and sleeping in their own beds. The house is a complete disaster, there are piles of laundry all over the place but all of that can wait while I stop to play with these happy faces.

A friend of mine from Ft. Lewis moved here about 6 months ago. She just had a baby and I was able to go visit them in the hospital. I was able to meet their brand new son when he was just 27 hours old. The 30 minutes I spent holding him are the highlight of my week. There's something so soothing about holding a brand new baby!

I'm having a hard time motivating myself to clean and organize things around the house because we're planning another road trip. We're leaving next week to head to New Orleans and Houston. It's been almost 2 years since we were home and we're excited we were able to squeeze in a trip before school starts in the fall. We can't wait for family and friends to see these smiling faces!

Finally we ended the week with a trip to Chuck E. Cheese. We all had a great time. We've carried around extra tokens for over a year but Chuck E. Cheese is loaded will all kinds of kid germs so we've avoided it. We were finally able to go. Olivia and Peter both enjoyed the rides and the pizza.

And by the way, I've discovered Picasa (free photo editing software) and I'm LOVING it! I made the vacation slide show using Picasa and the photo collages above. It's super easy and fast!

1 comment:

Ashley said...: I use to use picasa like a mad woman! Still do for all my collages!

Love it!

Anyway......have fun on your road trip!!; Monday, August 02, 2010 11:17:00 PM

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.