Life with The Leivas: What took so long?

Sunday, May 3, 2009

What took so long?

While we were at Mass today Olivia went to the nursery. She had a great time playing with the other kids and Mike and I were able to really enjoy Mass together with Peter. I've been thinking about this for a while. Why did I wait so long? This same thing happened when I went into labor with Olivia. I didn't think I needed any painkillers, I thought that I could have a natural childbirth. I had prepared for a natural childbirth. Even though I had to be induced and was getting the maximum amount of labor inducing drugs I still thought that I didn't need any pain medication. Even though the doctor had to manually break my water I thought that I didn't need pain medication. I waited until I had been in labor for 9 hours before I finally decided that I was ready for pain medication. Immediately after I got the epidural my first thought was, why did I wait so long for this! I realize that I'm a stubborn person but I also think it makes me appreciate the outcome even more. That epidural was fantastic and Mass today was peaceful and fulfilling.

1 comment:

Anna M said...: I am completely with you on the epidural! I waited a while too...wanting to go naturally...but goodness, glad those things were invented!; Monday, May 04, 2009 2:47:00 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.