Life with The Leivas: Hunker Down

Monday, May 24, 2010

Hunker Down

On the news this morning they announced that today marks the beginning of Hurricane Preparedness Week in preparation for the official start of Hurricane season on June 1st. Both Mike and I grew up along the Gulf Coast but it's been 6 years since we've lived anywhere where we've had to worry about Hurricane season. There were a couple of typhoon warnings for the Puget Sound when we were living in Washington state but that wasn't really a big cause for concern. I'm not saying typhoons are not cause for concern just the possibility that it would have actually reached the Puget Sound. I'm trying to resist the urge to go stock up on bottled water and canned goods.

In other news we are all doing well. Peter is saying new words everyday, it's amazing to see how quickly he picks up on new things. He knows exactly which plants to water in the garden all by himself. I need to schedule his 18 month well baby visit, he was 18 months old earlier this month, I'm a little behind. Olivia is doing really well. She has been quite the giggly girl lately and it's nice to see her so happy. She's starting to use a few more words again, "goat" was a favorite this weekend, but she's not really communicating verbally. She does ask for pepperoni, she calls it "roni" and she never touched the stuff before her transplant. She loved pizza but would always pick off the pepperoni. Now she can't get enough of the stuff and pepperoni has become a weekly staple on our grocery list.

On tap for this week are the usual therapy sessions, an IEP meeting, and the All American Games. The All American Games are the 82nd Airborne Division's annual field day competition. Each brigade forms their own team and they compete against each other in baseball, football, tug-of-war, etc. The FRG is selling hot dogs as a fundraiser at the games so we'll be busy with that. This weekend Mike and I are going on a marriage retreat sponsored by the army. We've heard great things about these retreats and are looking forward to going but I'm nervous about the kids. They have childcare provided at the retreat location but since Olivia (because of her immune system) and Peter (because he hasn't had any of his shots because of Olivia's immune system) cannot be with other kids we are bringing our babysitter with us. I'm nervous but I know that Mike and I are both looking forward to spending some time together. Did I mention that the retreat is in Myrtle Beach? That's some serious motivation to get through this week!

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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.