Life with The Leivas: The 90's are here to stay

Thursday, June 2, 2011

The 90's are here to stay

I was looking at the blog the other day and realized that I hadn't blogged very often during the month of May but it was an especially busy month for us with my trip to New Orleans, a visit from my Mom, a trip to Dallas for a wedding, doctor appointments and IEP meetings for Olivia, school registration for Peter and a trip to Washington DC to finish up the month! Sheesh I'm tired just thinking of all we did last month.

I have so much to get caught up on but until I get around to it........

I don't know when the official start of summer is but here in North Carolina the 90's are here to stay! I know I've said this before but after living in Washington where we would go MONTHS without sunshine I will never take it for granted again. So bring on the sun we're ready for summer!

The last couple of pictures are from the birthday party that Peter and I attended. All the parents were impressed at how well all the kids played together. I was impressed at how much Peter loved the simple plastic pool. We have a much larger inflatable one that we rarely use because it's such a pain. I'm heading to wal-mart to buy the cheap plastic one ASAP!

1 comment:

Brandy said...: It is 56, cold and rainy here. Wish we had sunshine or at least enough warmth to not wear jackets or pants. Cute pics!!!!; Thursday, June 02, 2011 8:51:00 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.