Life with The Leivas: Weekend Recap

Monday, September 28, 2009

Weekend Recap

We had such a great weekend, I'm so sad it's over. On Thursday night I drove to Ft. Bragg, leaving Olivia with Amy for the night. Amy and Olivia had a great time. Mike and I were able to go out to dinner with two other couples and we had a great time. We went out to dinner with 2 of our friends from Ft. Carson (colorado) that Mike met during his second deployment and their dates. We had a great time reminiscing and I got to meet two new friends so at least I'll know someone when we move to Ft. Bragg. They also happen to be nurses in the area so it's nice to get some insight about local hospitals/doctors/medical stuff.

Friday morning Mike and I drove back to Durham in time to take Olivia to her appointment at the clinic. Olivia is continuing to do really well. Friday evening I took Amy out in Durham for a little sister bonding time before she left. We walked around downtown Durham and window shopped a bit. We had been planning on going to a mexican restaurant and having margaritas but instead we decided to check out a Brazilian Steakhouse. It was so yummy and we had a great time! I think I even have a new favorite cocktail....the caipirinha. It's a cross between a margarita and a mojito and it was wonderful! If you're ever in Durham and looking for a unique dinning experience then check out Chamas Churrascaria.

Saturday I took Amy to the airport. I can't believe that she's been here for over a month! I feel like the time has flown by. I've really enjoyed having Amy here. Olivia and I will miss her!

Sunday was a pretty laid back day. We did take a trip to Duke Forest and went for a walk with Olivia. It's a beautiful area and I think Olivia really enjoyed the fresh air, even though she still has to wear her mask. Mike left on Sunday afternoon to head back to Ft. Bragg. Already looking forward to next weekend!

1 comment:

Katy Eichelberger Franz said...: Love reading your updates, Laurie. You know i am always thinking of you and your family and keep you lifted in my prayers. You are one of the most amazing women i know - and Olivia and Peter (and Mike) are SO lucky to have you. :) Glad you had fun with Amy!!! XXOO; Tuesday, September 29, 2009 8:28:00 AM

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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.