Life with The Leivas: Siblings

Thursday, August 27, 2009

Siblings

Olivia is doing well. Today is day + 35, WBC is 22. Olivia is officially off of the IV nutrition (as of Tuesday, day +33)! At this point we are waiting to make sure that she is able to continue to maintain her weight. They are continuing to wean her off a couple of her medications and she is now taking 6 of her medicines by mouth and we just have one more to go. Then we hope we will only be going home with 2 IV medications! We have a tentative discharge date of Tuesday, September 1st! I don't want to get too excited, we want to make sure that Olivia is really ready to leave the hospital but just the thought of leaving next week is really exciting!

It was really nice to see Olivia and Peter together today. She was so happy to see him. I just love these pictures that I got of the two of them together. Do not be alarmed by the poka-dots on Olivia's head, that was an art class accident.

4 comments:

Joe and Kami said...: Those pictures are precious! And yay for Olivia and her great progress! I have been keeping Marti and Lori and Laura at CTC posted on all that has been going on and everyone is sending prayers and good thoughts your way. I miss you guys and am thrilled that things are going so well!; Friday, August 28, 2009 12:17:00 AM
Wendy Leiva said...: Adorable pictures!So glad you got to have your babies back together.; Friday, August 28, 2009 7:39:00 PM
Ashley said...: I looked at the photos first, then read! I'll admit, I was a tad alarmed, I'm so glad everything is going so well, and they look happy to be reunited! Cuties!!; Friday, August 28, 2009 8:03:00 PM
Brandy said...: These pictures are adorable. Nothing like the love of a sibling.; Friday, August 28, 2009 9:51:00 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.