Life with The Leivas: Bikes and Balance

Wednesday, April 25, 2012

Bikes and Balance

Life is like riding a bicycle. To keep your balance you must keep moving.
~ Albert Einstein

I have definitely had a hard time finding balance now that I've gone back to work. I love my job, I love that it's challenging and rewarding. I love knowing that the kids are in great hands all day long weather they're at school or with the nanny. I love that Mike and I share more of the daily parenting responsibilities. But finding balance is always tough. I really appreciated the transition to daylight savings time as it gives us a few hours of daylight to enjoy with the kids.

I do miss my girlfriends! Someday I hope I'll have time to call you back!

1 comment:

Anna M said...: I go through days when I really wish I was back at work but then I know I'd still struggle with this thing you call balance. Mamas never have it easy! But I do love this bike that your kids are riding...how awesome is that!!; Saturday, April 28, 2012 8:45:00 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.