Life with The Leivas

Thursday, May 14, 2009

My little man

We've spent a lot of time focusing on Olivia lately but Peter is getting to be so much fun! I can't believe that he's already 6 months old! He started baby food this last week and he LOVES it. No matter what it is he can't seem to get enough. He's so different from Olivia. She could take baby food or leave it, she only really loved the applesauce. Peter loves all of it! His favorites so far include squash and peas. The other day I was cleaning out Peter's closet and he discovered that he loves to look at himself in the full length mirror on his closet door. Too funny! He can sit up by himself but he's not interested in sitting still. He is almost crawling!

Wednesday, May 13, 2009

APPROVED

Praise God our prayers have been answered! We found out this afternoon that TriCare APPROVED our request for a transplant for Olivia. I'll share more tomorrow about the transplant process and where we go for here but tonight we're just celebrating that it was approved and we can stop our battle with the insurance company. Thank you for all your prayers and good thoughts!

Tuesday, May 12, 2009

I should get out more

So I had a fantastic time on my day alone! I ran a few errands. I went to McDonalds and tried their new iced mocha. I am not sure why but we get coupons for McDonalds in the mail all the time but they're in spanish. I'm sure it's some sort of marketing ploy based on our last name. The iced mocha was ok but I think I still prefer starbucks. I went to the park and read my book in peace for hours. I got to watch the ferry coming and going. It was wonderful. I came home refreshed and relaxed. Here's a pictrure of the beautiful view from my reading spot. I came home excited to tell Mike about my day. He asked what I did and I happily shared my day with him and his response was hmmm. I would have gone to a movie. Why didn't I think of that, I would have loved to see a movie! Oh well, I guess I should get out more!

Sunday, May 10, 2009

Random

I absolutely love the neighborhood where we live. It's very family friendy. It's so close Mike can run to work. There are miles of trails. There are plenty of parks. We live in a great school district. I could go on and on. However today we were out on a walk, we're in the middle of the woods, we'd been walking along in the woods for about a mile when we saw this.....

seriously. It was so unexpected. We were in the middle of the woods, not a house or another human being in sight. Random.

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.