Showing posts from April, 2012

part 1 Jennifers story. daughter of lily our schiz kid highlight

this is our second family we are highlighting thanks so much for letting us share Lily's story
 It was a typical Wednesday June 25, 2009. I recently just moved back to CO & was living with my mom & step dad. I came home from work ate dinner & watched True Blood on the DVR with my parents then went to bed. I woke up around 3am with back pain & abdominal cramps, it was around the time for me to start menstruating so I didn't think much of it, took Tylenol & plugged in my heat pad & went back to sleep. I called into work that morning & also told my mom I wasn't feeling well & was staying home. She had meetings in Denver that day about 1.5 hrs away but wanted me to call if I needed anything (It was very unusual for me to be sick, or miss work). Around 9am I started to have a lot of lower pelvic pressure, my back was aching & I felt like I had to urinate but nothing would come out when I tried... As I'm sitting on the toilet I look betwe…

Timmy Voted Favorite disabled Character on television

Timmy and Jimmy on South Park
It's ironic that Comedy Central execs were on the fence about Timmy joining the cast of the already provocative show, South Park. Touting themselves as "equal opportunity offenders," South Park creators Matt Stone and Trey Parker fought to include Timmy. He's characterized by a constant grin, motorized wheelchair and the animated use of his own name to express his thoughts.
His disability is never identified (he might be a kid with CP, but an episode reveals that both of his parents are living with a similar condition, alluding to a genetic predisposition), but Timmy is every bit as twisted and thoroughly lovable as the rest of the kids in South Park. His depiction is unabashed, full-on satire, and easily the boldest representation of disability on American television ever. So revered, in fact, that he was voted "The Greatest Disabled TV Character" by a progressive British audience in a poll posed by BBC disability-centric site,…

we love Breakthroughs

Nanomaterials offer hope for cerebral palsy Rabbits with brain injuries hop again after treatment with dendrimers. Amy Maxmen18 April 2012 Dendrimers, artificial branched polymers, deliver therapeutic drugs to inflamed brain cells. HYBRID MEDICAL ANIMATION/SPL Article toolsprintemailrights and permissions

Info on Schizencephaly

ORDR lists rare diseases for information purposes only and does not guarantee that a condition is rare. Read moreThe links on this page may take you to sites outside of the NIH. (See Disclaimer for details.)
Schizencephaly is a developmental birth defect. It is characterized by abnormal slits or clefts in the cerebral hemispheres of the brain. People with clefts in both hemispheres commonly have developmental delays, delays in speech and language skills, seizures, and problems with brain-spinal cord communication. Individuals with clefts in only one hemisphere are often paralyzed on one side of the body, may have seizures, and may have average to near-average intelligence. Other signs and symptoms may include an abnormally small head (microcephaly), hydrocephalus, intellectual disability, partial or complete paralysis, or poor muscle tone (hypotonia). Treatment generally consists of physical therapy and drugs to prevent seizures. In cases that are complicated by hydroceph…

Big brother makes bracelets for awareness

Bracelets and doggie collars for awareness and research for Schizencephaly. So proud of River

Noah is laughing over his new glasses.

Schizencephaly On Nancy Grace

Nancy continues to bless us with support and has been so helpful in sharing Noahs story. we love her

Neptune Blue

I met a boy an inevitable man that will stand before me and one day shake my hand and say, "Hello, my name is Noah...." this I know to be true because truth is born and lives in the eyes and his sing to me sweet melodies of purity messages of hope intertwined in a song called  Neptune Blue speechless words swell in the azure orbs of this bright young soldier and laughter is his weapon of choice his voice to help teach those he touches he laughs with a surprising prank as you become the joke of underestimation   he has yet to walk, or skip, or dance, or dive but this special lad can fly in ways we cannot dare as he has no cares for the silly things that surround us in our beginning world for he is a leader of all the bodies of water around him unable to drown a conductor of the current moment and the theme to a dolphin symphony known as Neptune Blue

count your Blessings

OK I admit I do not click everyones emails and status updated that talk about breast cancer or what is happening in politics. I get that. But what I do get is the fact that I try to communicate with most of my friends on here. all 1900+.... because almost everyone I added I have mentioned Noahs disease or the fact I am doing what I do for him. And I do not mean to sound rude or crass but seriously I see more feedback from the moms with schiz kids than any one else and sometimes I am shocked over it....  so a little shot out to the many people that deal with what I deal with on a daily basis for a few seconds I will be talking about what others seem to not care or want to understand!  what irrates me more about all of this is the people that post complaints everyday about their lives. I can assure  you that you cannot find one single post that is complaining or crying about something. People spend more time thinking about themselves in life that they cannot see for one minute what the…