Life with The Leivas: Lunch Date

Tuesday, July 6, 2010

Lunch Date

To say that I am enjoying our respite care is an enormous understatement. We are so blessed to have found such a wonderful respite care provider. I am loving the extra time that I get to spend with Peter. I am able to relax and enjoy a few hours away knowing that Olivia is in good hands. She is happy, and entertained, and well cared for. As a result I am more patient, more laid back, I'm a better mom because I'm able to get a bit of a break. Peter and I run errands together, he gets to drive the fancy car grocery cart at the supermarket. We get to ride in the car with the windows down. We go to the library together.

Last week we met Mike for a special lunch date as he was getting out of the field. It was such a treat to have lunch with my two special guys! We went to a Wing place near our house. It's an absolute dive but they do have great wings. Peter even enjoyed his first chicken wing.

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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.