Life with The Leivas

Thursday, November 3, 2011

New MD

We met our new pediatrician. She seems great, we chose Ochsner, specifically the Children's Health Center at Ochsner. We went for well-child check ups for both Olivia and Peter and began the process of getting referrals set up for all of Olivia's specialsts. They booked an appointment for each child back-to-back so we had 2 hours to spend with the doctor. We talked through medical histories and I gave the doctor a ton of information about Sanfilippo syndrome. Olivia got her 3rd series of vaccines and both Olivia and Peter got flu shots. I think we are really going to enjoy some time away from the military healtcare system for a bit. We certainly enjoyed our time in the waiting room!

And now for the Stats:
Peter weighs in at 32 lbs and is 37 1/2 inches tall
Olivia is a heafty 45 lbs and is 45 inches tall. Love that she's as tall as she is heavy. Wonder how long that will last....

Wednesday, November 2, 2011

Cheers for the Happy Couple

Beautiful Wedding! Beautiful Bride! Beautiful Couple!

One of the best parts about moving back to New Orleans is being able to attend some of the weddings that we get invited to. We attended the wedding of one of my sorority sisters this past weekend. Cheers for the newlyweds!

Monday, October 31, 2011

Teaser

A true teaser.....

Let the costume guessing begin! More tomorrow but this momma is exhausted!

Sunday, October 30, 2011

Fall Fun

I know that some areas of the country are covered in snow but we enjoyed a beautiful fall weekend here in New Orleans!

Happy Early Halloween!

Oliva decided there was no way she was touching the pumpkin gunk!

Peter insists that pumpkins are full of 'poop' no matter how hard we try to convince him otherwise.

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.