Life with The Leivas: Monday Ramblings

Monday, January 11, 2010

Monday Ramblings

I think I had one too many cups of coffee this morning and have been a little hyper all day so here's the random things going through my mind today.....

I am actually really glad that I didn't go back to bed this morning at 5:30 when Mike was banging on the window because he'd locked himself out of the car.
Speaking of getting up early, I love the new elliptical machine and I wonder when I'll stop calling it the "new" elliptical machine.
Speaking of working out, I'm really proud of myself for not eating any of Olivia's peanut butter M&M's!
Speaking of Olivia eating, she's eating almost constantly but she's not gaining any weight! I'm nervous about Wednesday's appointment.
Speaking of Wednesday's appointment, I am excited to report to Dr. Paul how impressed the physical and occupational therapists are with Olivia's progress
Speaking of Olivia's progress, I love her new therapists and I've even happier that Olivia seems to like them too, even when she gets mad at them for making her work hard.
Speaking of Olivia working hard, it amazes me how easy so many things are for Peter. Now I realize that he just naturally does so many of the little things that I worked so hard to help Olivia learn to do. I hate that SanFilippo syndrome brings so much bittersweetness (is that even a word) into our lives. It's sweet to see Peter do new things, but bitter to know that Olivia had to work so hard to accomplish those same things.
Speaking of being a mom of kids with special needs, I am absolutely all for awareness and finding a cure and fighting but for now I think I need to take a break from all of it
Speaking of taking a break from all of it, I know my friend A. knows what I'm talking about, her mom recently passed from Breast Cancer but she's struggling to jump back on the Breast Cancer Awareness/Research Support/etc bandwagon. While I haven't faced anything nearly as devastating I know exactly what she's talking about but she's able to express herself so much more eloquently.
Speaking of friends, I had a fantastic conversation with a friend today and I love that we know exactly what the other is trying to say, I wish we lived closer to each other.

Can you tell we've been reading a lot of those "If you Give a Mouse a Cookie" books? Olivia got several of them for Christmas and we've been reading them often. If you don't know what I'm talking about you'll have to stop by your library and check one out

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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.