Life with The Leivas: Day + 32

Monday, August 24, 2009

Day + 32

Olivia feels really good today, she woke up happy and has been very cheerful all day. She walked several laps out in the hall and then went to the playroom to color. We came back to our room and now she's napping. Her WBC is 21.8 and her ANC is 17,440! An average person's WBS is between 8 and 12 so Olivia's is very high. They have decided to stop her GCSF which is the medication that helps stimulate white blood cell production and only give her a dose if her WBC falls below 10. They are also weaning her off of several medications and she's beginning to take even more of her medications by mouth so things are moving in the right direction.

I also just met Olivia's teacher. Duke Hospital has an agreement with Durham Public Schools and they provide one-on-one instruction while children are unable to attend school elsewhere. I am so glad that we were able to get Olivia's IEP finished before leaving Washington. Her teacher seems nice and while it's not even close to the wonderful preschool experience that she would have had in Washington it has to be better than nothing. Olivia was actually napping when the teacher came by to meet her so she will have to come back tomorrow. I'm so nervous about trusting Olivia to these strangers. I was nervous about meeting Olivia's teachers back in Washington but they made everything so easy. They were so accomidating and for the first time since Olivia's diagnosis I began to be excited about Olivia going to school. I know it would have been such a wonderful supportive environment for both of us. I'm nervous about this Durham County Hospital school, I'm scared that they won't recognize and appreciate Olivia for who she is and who she can be. I gave the teacher a copy of Olivia's IEP today and she promosed to look it over and come back and discuss it (and meet Olivia) tomorrow. I'm sure that things will go well but I'm nervous about it. For all those wonderful people at the Steilacoom School District, we miss you!

2 comments:

Anna M said...: That's great that school is offered, Laurie. And I can completely understand being apprehensive about trusting Olivia to new teachers. I bet most moms go through that, regardless of their children's health.; Monday, August 24, 2009 5:03:00 PM
Alyssa said...: So so so nice to read that Olivia is well on her way outta there!!!! Grow cells Grow!!!! Great job Olivia!; Tuesday, August 25, 2009 12:57:00 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.