Life with The Leivas

Thursday, February 26, 2009

is getting so big! It's so rare to see Olivia actually smiling for a picture. How can I get mad at her for sitting in her brother's swing when she smiles at me like that. I do realize that she has me completely wrapped around her finger.

Sunday, February 22, 2009

Calphalon...made to last!

I'm loosing it, in the midst of yesterday's nap time poop incident I left the pot of soup we had for lunch on the stove. When I took Olivia upstairs to put her down for her nap I left the soup on low so that it would be warm when I sat down to have some after putting Olivia down. Yesterday after the poop incident and the massive clean up we went outside and then I got caught up in making dinner, bathtime,etc. When we went downstairs for breakfast this morning I saw the pot of soup on the stove, still on low! I can't believe I was so irresponsible! We have a gas stove so I could have burnt the house down! However, I am very impressed with the Calphalon pot. The soup was burnt to a crisp in the bottom of the pot but after soaking in some hot water for a few minutes it was good as new! Good thing we got all that fancy cookware as a wedding gift!

The magic of disney

Today was one of those really long days (see the earlier post). Olivia didn't take a nap today so at 6pm she was grumpy and fussy. That means bathtime (for the 2nd time today). After her bath it wasn't quite bedtime so I thought I'd give movie night a try. I grabbed our new copy of Sleeping Beauty and we crawled into my bed in our pj's with the labtop and put in the movie. Olivia doesn't watch TV, she will watch a few seconds of Oprah (because of the clapping) and Ellen (because of the dancing) but that's pretty much it. I've tried tons of cartoons and almost every program on the Noggin "preschool on tv" network, she's just not that into it. Which is fine, I don't want my kiddo to be addicted to the tv but a few minutes would be nice. Anyway, Olivia loved Sleeping Beauty! She sat through the entire 75 minutes! She happily pointed out things in the movie and every time Maleficent left the scene she happily said "bye bye". It was adorable. Thank Goodness! After this afternoon's experience we needed to end the day on a good note!

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.