Life with The Leivas: Christmas Whoops!

Friday, December 25, 2009

Christmas Whoops!

We had a peaceful Christmas around here. The kids slept until 8am. We went through our stockings. Olivia helped me make monkey bread for breakfast. We started unwrapping gifts. We wanted to let the kids open each item so it took a while (almost 4 hours but who's counting). Peter took a little nap so Mike and I were able to focus on opening presents with Olivia for a bit. Peter woke up and we continued unwrapping. The kids got a ton of gifts. We had lunch and then skyped with my parents and Amy. Both kids took long afternoon naps and then we had a lovely Christmas dinner. We ate in the dinning room and used the real china (well Mike, Olivia, and I used the real china, Peter used his highchair tray). We got the kids into bed then I went to upload the pictures and somehow I managed to delete 2/3 of the pictures I took today, WHOOPS!

Oh well, we had a good day! Merry Christmas!

2 comments:

Ashley said...: I did that with our thanksgiving pictures, I was SO sad!

Merry Christmas!! :); Friday, December 25, 2009 10:10:00 PM
Anna M said...: Oh man! I have deleted a batch of pictures before and it makes you sick...but also reminds you how important it is to just live in the moment. Merry Christmas!!; Sunday, December 27, 2009 1:23:00 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.