Ava Jewel Leilani all so known as OYA (a true warrior): Cheese Ball

Sunday, November 1, 2009

Cheese Ball

Today I was cleaning our room while Ava-Jewel was downstairs for her father's visit, I found something that I wrote down when Ava-Jewel was born.
My world was filled with darkness. You are my star who lights my world.
Well my Jewel, you certainly have changed mommy for the better and you have filled my heart with so much love and happiness. Thank you for choosing me and for lighting up my world. I just wish that becoming a mom wouldn't have turned me into such a sap ;) Mommy Loves You xo xo xo

2 comments:

Laura said...: Beautiful!!!
Love Ya!
xoxo; November 2, 2009 8:11 AM
camille said...: She is so gorgeous! (Hey, how come I can't "friend" you on facebook? I see your name on there but facebook won't let me click on it. I don't get that! I searched for you too but didn't find your name. I'm so confused - and apparently not very tech savvy.); November 11, 2009 1:56 PM

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What Is Williams Syndrome?

Williams Syndrome (WS) is a rare genetic disorder characterized by mild to moderate mental retardation or learning difficulties, a distinctive facial appearance, and a unique personality that combines over-friendliness and high levels of empathy with anxiety. The most significant medical problem associated with WS is cardiovascular disease caused by narrowed arteries. WS is also associated with elevated blood calcium levels in infancy. A random genetic mutation (deletion of a small piece of chromosome 7), rather than inheritance, most often causes the disorder. However, individuals who have WS have a 50 percent chance of passing it on if they decide to have children. The characteristic facial features of WS include puffiness around the eyes, a short nose with a broad nasal tip, wide mouth, full cheeks, full lips, and a small chin. People with WS are also likely to have a long neck, sloping shoulders, short stature, limited mobility in their joints, and curvature of the spine. Some individuals with WS have a star-like pattern in the iris of their eyes. Infants with WS are often irritable and colicky, with feeding problems that keep them from gaining weight. Chronic abdominal pain is common in adolescents and adults. By age 30, the majority of individuals with WS have diabetes or pre-diabetes and mild to moderate sensorineural hearing loss (a form of deafness due to disturbed function of the auditory nerve). For some people, hearing loss may begin as early as late childhood. WS also is associated with a characteristic “cognitive profile” of mental strengths and weaknesses composed of strengths in verbal short-term memory and language, combined with severe weakness in visuospatial construction (the skills used to copy patterns, draw, or write). Within language, the strongest skills are typically in concrete, practical vocabulary, which in many cases is in the low average to average range for the general population. Abstract or conceptual-relational vocabulary is much more limited. Most older children and adults with WS speak fluently and use good grammar. More than 50% of children with WS have attention deficit disorders (ADD or ADHD), and about 50% have specific phobias, such as a fear of loud noises. The majority of individuals with WS worry excessively.
Is there any treatment?
There is no cure for Williams syndrome, nor is there a standard course of treatment. Because WS is an uncommon and complex disorder, multidisciplinary clinics have been established at several centers in the United States . Treatments are based on an individual’s particular symptoms. People with WS require regular cardiovascular monitoring for potential medical problems, such as symptomatic narrowing of the blood vessels, high blood pressure, and heart failure
What is the prognosis?
The prognosis for individuals with WS varies. Some degree of mental retardation is found in most people with the disorder. Some adults are able to function independently, complete academic or vocational school, and live in supervised homes or on their own; most live with a caregiver. Parents can increase the likelihood that their child will be able to live semi-independently by teaching self-help skills early. Early intervention and individualized educational programs designed with the distinct cognitive and personality profiles of WS in mind also help individuals maximize their potential. Medical complications associated with the disorder may shorten the lifespans of some individuals with WS.

We all have our own special needs

Ava Jewel was born at Pennsylvania Hospital where she spent a month in the NICU due to the fact her weight kept fluctuating. While she was in the NICU they diagnosed her with a heart murmur, sacral dimple and she failed her hearing test twice.
All of her specialist are at Children's Hospital of Philadelphia and it was her cardiac doctor who sent her for the fish test and I found out in June of 07 she has William's Syndrome. Personally for myself finding out has taken some of the guilt I have had off my shoulders, see, I thought for the longest time Ava Jewel was so sensitive to touch and noises and cried as much was because I wasn't able to hold her the day she came into the world and then I couldn't see her for a week cause I was in the intensive care unit.
When Ava Jewel was home I use to carry her in a baby sling, I did skin to skin with her, baby massages, she wouldn't brestfeed, and at times I thought it must be me, that I was a failure at motherhood. I realize now that I am not a failure, in fact I don't think I have ever done anything in my life so well, I am One Fab Mama.

Ava Jewel Leilani all so known as OYA (a true warrior)

Williams Syndrome Information Page

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Sunday, November 1, 2009

Cheese Ball

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What Is Williams Syndrome?

We all have our own special needs