Life with The Leivas: This time next week I will get to see Peter

Friday, August 21, 2009

This time next week I will get to see Peter

I am so excited. Olivia is continuing to do well, the doctors are anticipating that we will be released from the hospital during the week of August 31st. My mom, Amy and Peter are all coming to North Carolina for a visit! They will be able to help us get the apartment cleaned and ready for Olivia. I will be able to spend some time catching up with Peter and I hope they will all be able to stick around for discharge. Then Amy will stay here to help with Olivia for a few weeks and my Mom and Peter will go back to Texas. It's been almost 2 months since I've been able to hold Peter and I can't wait! He just seems to be getting more adorable by the minute. I hope that he remembers me! Thanks to Skype I am able to see him pretty often. I even got to see him devour 4 big meatballs the other day, he's eating real food already and loving it. Even though it has been absolutely terrible being away from him I know that it was the best decision for our family that he live with my parents foor a bit in Texas. Here are just a few pictures of that adoarble little guy!

Seriously, look at that adorable grin!

Via skype, such a serious face.

Summer fun!

2 comments:

Ashley said...: So pumped for you Laurie! I'm sure he'll remember you :); Friday, August 21, 2009 3:56:00 PM
Laura said...: I'm so glad that Peter is coming to see you. I hope everything goes as planned for discharge and moving in to your new digs. I'm thinking of Olivia and your family!; Sunday, August 23, 2009 7:01:00 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.