Life with The Leivas

Saturday, January 26, 2013

Weekends

Now that the Christmas Break is over and I'm back to traveling for work and Mike's ROTC students are back for classes and labs and training sessions and he's back in class for his last semester of grad school weekends together are a previous commodity around here!

I was in NYC last weekend and Mike is in Florida this weekend so I find myself reminiscing about our weekend walk/bike ride earlier this month. The kids and I repeated the experience today but it wasn't the same without him (and there certainly aren't any pictures because 2 kids and 1 bike kept my hands too full to take pictures).
These are from a couple of weekends ago.

Saturday, January 12, 2013

I can neither confirm nor deny...

That this past week when Mike was out of town and severe thunderstorms and flash flooding were predicted I can neither confirm nor deny that Olivia, Peter and I played hooky from school/daycare/work. Perhaps we ran a couple of errands and spent the day cuddled up at home watching movies or perhaps we did not. Thank goodness for Krispy Kreme and my laptop that allows me to connect to Loyola's network and work from anywhere!

Wednesday, January 9, 2013

Happy Birthday

Happy Birthday to an amazing partner and father and the best husband a girl could hope for! As I look at some of these photos I realize that we've grown up together and made a life together. Here's to growing old together! We love you! Here's to a great year!

Monday, January 7, 2013

Wake up Wivey

One of our nicknames for Olivia is Livey but Peter has trouble pronouncing the "L" so he pronounces it wiv-ey. Peter is our predictable-early to bed-early to rise child. He falls asleep between 7:30 and 8:00 p.m. like clockwork and he wakes up between 5:50 and 6:20 am. Every. Single. Morning.

Olivia has a much less structured sleep schedule (yet another symptom of Sanfilippo Syndrome). Last night she fell asleep around 10:30 and was still fast asleep at 7 am. Peter got to wake her up so we could get ready for school. He stole the covers, tickled the toes, gave her butterfly kisses, and when all else failed he pulled out a superhero mask and proceeded to shout things like "yoohoo", "to Infanity and beyond", and "cock-doodle-doo". Rise and shine sweet girl, no rest for the weary around here.

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.