Life with The Leivas

Monday, January 12, 2009

What a cutie!

From a frown to a smile in less than 10 seconds.

Isn't he the cutest!

Tonight was one of those nights where I had no desire to cook, I jokingly asked Olivia what she wanted for dinner and to my surprise she told me! I had to reward this communication accomplishment so I told her that she could choose what she wanted for dinner. So here's what she chose:

That's right, that's banana ("nanner"), hot dog ("hot dog"), cheese ("cheese"), pepperoni ("roni"). I'm sure she's available to plan your dinner menu too. In case you were wondering I had a baked potato and a glass of wine.

Friday, January 9, 2009

My Boys

They're even color coordinated!

Dinner Date

Tonight Olivia and I had a dinner date. Olivia helped me make pizza and we had a blast. Apparently Olivia loves pepperoni cold, right from the package, but put it on a pizza and bake it and she refuses to eat it.

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.