Life with The Leivas: Respite

Friday, June 4, 2010

Respite

I may have mentioned that last month I began the process of getting some respite care. Army Community Service has a respite program though which respite care is provided for qualifying children at no cost to the family. It does seem like a great program but it's been quite a process to get things started. The doctor had to complete a 10 page form, her school teacher, physical therapist, occupational therapist, and speech therapist all had to complete various forms. I had to supply a copy of her IEP. These documents were reviewed by medical administrators who then forwarded them to Army Community Service. We then had a home visit with the respite care coordinator who evaluated Olivia and officially determined her "eligible." He then used a a formula (his word not mine) to magically determine that based on various factors we qualified for 32 hours of Respite care a month. Of course a board had to meet somewhere in order to make this whole thing official. It has been quite the process. It seems like a lot of hours to me at this point but I guess that's a good thing. If we had a family member living near us they could become our respite care provider but since my husband is in the Army and we've moved 6 times in the last 4 years I'm not sure how that's relevant. They did give me a 4 page list of qualified respite care providers in the area. I have spent some time speaking with several of them over the last couple of days. We're in the process of finding people that will be good fits for Olivia and our family.

This afternoon we met J. She was a special education teacher for over 20 years and has spent the last 15 years working as a play therapist. Olivia seemed to enjoy meeting her. J took copious notes during our meeting, it was an absolute pleasure to talk with her. She will be playing with Olivia every Friday morning. Peter and I will have 4 hours to ourselves. My head is just spinning with ideas for me and my little boy to spend quality time together. I am also very happy to give Olivia this time to just play, without any other purpose, no goals, just fun time for her.

2 comments:

Unknown said...: i am glad that you will be getting a break. But my math says that 4 hours every friday is only 16 hours a month, not 32. when are you booking the rest of your time?; Saturday, June 05, 2010 9:11:00 AM
Anna M said...: Oh this sounds perfect!! I'm so happy to hear this news and know how much you need it!; Sunday, June 06, 2010 2:03:00 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.