Life with The Leivas: Weekend Reflections

Sunday, October 18, 2009

Weekend Reflections

I can't believe that I'm about to say this and I'm sure I'll regret it by Wednesday but after this weekend I feel refreshed and ready for a new week! Here are my favorite parts about this weekend!

*It was so great to see Mike this weekend! I'm sad that it will be a whole 5 days till we see him again but we're lucky to see him at all. This was the first weekend since June 20th that we've spent as a family of four. So much has changed since then!

*I was able to do some shopping on my own. Carter's was having a great sale and I got a coupon so I was able to stock up on some cold weather clothes. I got fleece footie pajamas for both Olivia and Peter. I'm sad because I think this may be the last year that Olivia is able to wear the footie pajamas, she's already in a size 5T and compared to Peter's 12 month pajamas they are huge!

*I made corn and crab bisque this weekend, it was so good and I had tons leftover to freeze.

*Practically it was really nice to have another responsible adult around. Someone else to sit with Olivia when she was getting her breathing treatments, someone else to help with the bath time-bedtime routine, someone else to help get Olivia's meds ready and rinse out syringes.

*All of a sudden this weekend Olivia seems like such a little girl instead of a toddler. She was giggling and squealing just like a girl. She's growing up so fast! She loves it when Mike is here.

*Olivia and Peter are hilarious together. I know Olivia loves having someone to play with and so far they are playing really well together.

*I got to take a 30 minute nap this afternoon, it was short and sweet and I loved every second of it.

1 comment:

Rebekah said...: Corn and crab bisque! Yum, yum, yum! Will you send me the recipe? Miss you and your lovely soup... :); Monday, October 19, 2009 12:10:00 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.