Life with The Leivas: Peter's Week Recap

Monday, October 19, 2009

Peter's Week Recap

Dear Grandpa, Grandma, and Aunt Amy--

Thanks for helping me get back to my parents and Olivia. I could tell they missed me a lot. They were very impressed with all the cool things I learned when I was with you. I had just started crawling before my mini-deployment started and now I can crawl really fast! I suprised them all over the weekend when I started opening drawers. They are very impressed with my healthy appetite! I miss the dogs and the horses though, they don't have any pets around here. I go to the doctor's office with Olivia a lot. It's pretty interesting and the mom always brings good snacks. I like playing with Olivia except sometimes she gets mad at me and tries to lock me in rooms all by myself. Doesn't she know I can't open doors yet? That doesn't matter I've figured out how to bang on the door and yell really loud till the mom comes to rescue me. Speaking of the mom, she's okay except she keeps making me wear these stupid shoes. She won't stop taking pictures of me and she kisses me all the time. She keeps trying to hug me all the time, doesn't she understand I've got things to do and places to go! The dad is pretty cool, he gets up to play with me when I wake up in the middle of the night. They have all kinds of things around here for me to put in my mouth but the parents always see it and freak out. I especially like to put Olivia's puzzle pieces and fridge magnets in my mouth. I think the mom is on to me though she got rid of all that stuff so now I've got to look for new things to sneak into my mouth.

I miss you guys! Happy Birthday Grandma!

Love,

Little Pete

Mom, Dad, and Amy---I know that you guys all worked so hard to take care of Peter. We know that it couldn't have been easy to totally rearrange your lives. There's no way that Mike and I would have been able to focus on Olivia without knowing that Peter was so loved and well cared for. I'm glad that you had this time to spend with your grandson. I think he's happy to be back but he misses all of you!

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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.