Luke: The adventursome tales of a boy with a Dandy Walker Variant: Luke and the Princess...

Sunday, September 26, 2010

Luke and the Princess...

Luke loves all his siblings, but after figuring out how to get a movie on Netflicks (thank God it was a kid friendly one) he decided that his sister, Mikala was his princess and since she couldn't get him to grasp that Prince was for boys, Princess for girls, he became King Luke. Now coming back from school he has to hurry to "see my PRINCESS Mikala!"

1 comment:

Anonymous said...: Hello Kym! I am an Occupational Therapy student at SUNY Buffalo in New York state. I am currently working on a semester long project on a disorder of my choice in one of my courses. The disorder I chose was Dandy Walker Syndrome. I wrote an objective essay discussing what exactly DWS is, it’s etiology, symptoms, prognosis, etc. I am currently working on the subjective portion of my assignment. This entails finding a blog, website or just a family or person that has been diagnosed with DWS. I dug through several blogs before I came upon yours. I have chosen to write this portion of my project on your son and your family. I am extremely interested in Luke and amazed at how well you and your family have adjusted to his disability. I would like to talk more with you if you are interested. Please email me at kearsten@buffalo.edu God bless your son and your family and thank you for sharing your story. You have a very special boy who has and will do great things throughout life!; October 8, 2010 at 6:15 PM

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What is a Dandy Walker exactly?

Dandy Walker is known by many names: Dandy Walker Syndrome, Dandy Walker Malformation, Dandy Walker Cyst, Dandy Walker Variant.
By definition, Dandy Walker is a congenital brain malformation typically characterized by incomplete formation of the cerebellar vermis, dilation of the fourth ventricle, and enlargement of the posterior fossa. In layman's terms, Dandy Walker is a cyst in the cerebellum (typically symmetrical) that is involved with the fourth ventricle. This may interfere with the body's ability to drain cerebrospinal fluid from the brain, resulting in hydrocephalus.
Dandy Walker cysts are formed during early embryonic development, while the brain forms. The cyst in the cerebellum typically has several blood vessels running through it connecting to the brain, thereby prohibiting surgical removal. In most cases the cause of Dandy Walker is not known, though there are a few known cases resulting from autosomal recessive genes.
Dandy Walker is generally discovered before birth, by ultrasound. Symptoms in the newborn may include a bulge or lump on the back of the head ("bulging occiput"); a "hair collar", or patch of long hair just above this lump; red pigmented skin in the area of the lump (similar to a "stork bite" birthmark); increased head circumference (if hydrocephalus is present); a downward gaze (if hydrocephalus is present). Other symptoms of the syndrome can also include congenital heart problems; malformations of the face, fingers, or toes; other central nervous system structural anomalies (often agenesis of the corpus callosum); abnormal breathing patterns; motor delays; hypotonia; learning problems; mental retardation; high pain tolerance; seizures; reflux; nystagmus (jerky eyes); ataxia; and other complications.
There is an extreme range of severity with Dandy Walker. Some people have it their whole lives without any symptoms ever presenting; some infants may have it in association with other syndromes resulting in severe complications or death.

This info was copied from the website www.geocities.com/Heartland/Hills/3919/dws.htm

Luke: The adventursome tales of a boy with a Dandy Walker Variant

Sunday, September 26, 2010

Luke and the Princess...

1 comment:

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