Life with The Leivas: Calming down

Tuesday, May 19, 2009

Calming down

After my super long post earlier about how much I hated Madigan I am feeling much better now. Mike got home from work and I had a nice long bath and a glass of wine. I love that my husband can force me to stop and relax. To save you from reading the entire post earlier I'll just summarize....

Today Olivia was supposed to have a sedated MRI and hearing test. Even though we've spent weeks coordinating this it turned out to not be coordinated at all. Anesthesia didn't know they were doing an MRI. The MRI people didn't know they were doing a hearing test. The Audiology doctors didn't know they were doing an MRI. It took forever but everything worked out okay in the end. We don't have the results of the MRI, we'll get those on Thursday. Her hearing test was not very helpful. Apparently she's hearing perfectly out of her right ear but experiencing severe hearing loss in her left ear. They don't know if this is because her ear tube on that side is clogged and there's a fluid build up or if it's because the bones in her ear are not functioning properly. They recommend a CT scan to be sure. Until the issue can be resolved they told us to try and talk on her right side and to make eye contact when we're speaking with her.

1 comment:

Elena said...: Ohh Laurie, I feel so bad for what you had to endure today. I hope the MRI results are good, and maybe you can be thankful that its all over with. We will pray that this kind of thing doesn't happen in the future, and all you next appointments go smoothly.; Tuesday, May 19, 2009 11:36:00 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.