Life with The Leivas: What a Week!

Friday, December 5, 2008

What a Week!

TGIF!!!! So my first official week with both Olivia and Peter is over. When Mike came home from work today he said that he hadn't seen me look so joyful to see him in a while. I was joyful, I was relieved, I was ecstatic! I was prepared for being busy but it's not the endless list of things to do that is exhausting, it's the pressure of caring for two human beings that is exhausting. The little things.....the diapers, fixing meals, cleaning up, are becoming routine but knowing that I am the only adult around, the only one in charge of these two little beings that are depending on me completely is emotionally draining!

This has been a week of highs and lows but am so blessed to have this time to spend with Olivia and Peter. Here are just a few highlights (and some lowlights) from the week

Olivia decided to help me make her dinner and she added dried cranberries to her bowl of spaghetti noodles. She LOVED it (see picture below)
While I was feeding Peter the other day Olivia managed to climb into the washing machine and proceeded to get stuck. She then freaked out when she realized that she was stuck which made things worse. The only way I was able to calm her down enough so that I could help her out of the washing machine was by promising to let her hold Peter.
The house is a mess. Around Wednesday I completely gave up, there are toys everywhere, crumbs all over the place and the kitchen is a disaster.
Olivia decided to help me sweep the floor, as I was positively reinforcing her good behavior she then decided to stab me in the behind with a fork. I would have disciplined her for this inappropriate behavior but then I caught myself telling her that she was going to the corner because forks are for eating not stabbing people. As I realized what I was saying I started giggling and couldn't keep a straight face.
Peter now officially weighs more than he did at birth. He lost almost a pound from his birthweight but he's now gained that back and then some!

1 comment:

Scadoosh! said...: I decided I needed to read the fork story out loud to Chad but was dying laughing, so I barely got it out. That's so funny!! :-); Tuesday, December 23, 2008 8:59:00 PM

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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.