Monday, April 30, 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 between my legs & can see a finger widths strip of hair!? Oh my god I'm having a baby!! I had been on birth control, never felt any movement, no morning sickness, I had my cycle normally, I was in complete shock! I tore the shower curtain back, placed my hand on the wall looked up at the ceiling & thought well if I can see hair the baby is ready & probably can't breathe. I strip off my clothes & start to bear down. Her head came out & I cleared her air way with my fingers, she cries!! My dogs come running down the hallway into the bathroom, I'm standing in the shower holding her head just overwhelmed trying to get my dogs to quiet down. I push out the rest of her body. I obviously wasn't expecting this so didn't have a receiving blanket handy... I grabbed my tshirt & wrapped her up, the whole time I'm waiting for contractions to start & the worst imaginable pain of my life but nothing is happening. It's been about 2 minutes I know I need to cut the umbilical cord. I put a hand towel between my legs & carry her to the kitchen. I grabbed scissors, a zip lock bag & wash clothes. Back in the bathroom I cut the cord, filled the sink with warm water & begin to wash her off. Still no contractions so I gently start pulling on the severed cord & the placenta came free, intact so I placed it in the zip lock. Lily this entire time is bundled up on the floor mats while I've cleaned up her, myself & the bathroom. I notice she isn't staying very warm so I strip down, lay her skin to skin on my chest & wrap us in my robe, while I text my mom. She is still in her meeting but will call me in 10 minutes... She was 90 minutes away & I didn't want to alarm her so I hadn't told her I just had a baby, just that she call me as soon as possible. I was very calm throughout the entire process, My water never broke, there was very little amniotic fluid when she did come out, I wasn't bleeding & Lily was breathing evenly so I thought everything was going well considering... My mom calls & I tell her the news, she is laughing (because I am quite the jokester) so I get off the phone & send her a picture message. She immediately calls back & says I'm calling an ambulance you are in shock!! I said mom I'm fine the baby is fine & I can't afford a $3000 ambulance ride. When you get here you can take us to the hospital, if the baby starts having difficulties I'll call but right now it's not an emergency. At this point my mom says, "Only you Jennifer!". Lily was gestationally 28 or 29 weeks (they had to guess because I didn't know that I was pregnant & had been having a regular cycle throughout) she was 14 inches long & weighed 2 lbs 9 oz. She was stabilized at our local hospital but they didn't have a NICU so she was then transported to The Children's Hospital in Aurora, near Denver Colorado.

The team there was fantastic, Lily was doing very well considering how premature she was. During transport she was intubated but was breathing on her own within 12 hours, she presented as a typical premie nothing seemed unusual. On the 10th day they did an ultrasound to look for a bleed on her brain, that sometimes happens with premies & the images weren't very clear so they ordered an MRI. This is when she was diagnosed with bi-lateral open lipped schizencephaly. I was told this was a very rare brain malformation, the umbrella term is cerebral palsy & that they didn't really know why this happens or what her quality or longevity of life would be. She also was diagnosed with CVI (cortical visual impairment) & Congenital Nystagmus.

When the attending neurologist Julie Parson, M.D. went over Lily's MRI with my mother & I, it was very difficult to focus on exactly what she was saying. I distinctly remember her saying she would more than likely suffer seizures, severe motor delays, have cerebral palsy with poor motor movement, vision and feeding problems. I took it all in, I was already overwhelmed with being a mother unexpectedly & then to hear this was just devastating. I asked if they knew which skills she would have difficulties developing with the areas of her brain missing, Julie said no, there really isn't a way to know because sometimes other areas of the brain can take over & new pathways be created. From that point on I refused to believe that my child would be a diagnosis or textbook. I remember going home that night & crying in my room for about 3 hours. Questioning why this happened! She had fought so hard to be here, was this really how her life was going to be?! How unfair!! They had given me some pamphlets with random statistics showing that 1:1,000,000,000 births resulted in schizencephaly, many were immobile, on ventilators, ranged from mild to severe mental retardation, were non-verbal. Basically the worst case scenarios & nothing dated within the last 15 years. Later that night I found Schiz Kidz Buddies a yahoo support group while looking for answers of my own on line.

Lily's first picture
Lily first night home 54 days old

Schiz kid Highlight part 2 Liliy's story

by Tricia SchizencephalyAwareness Dennis on Tuesday, May 1, 2012 at 6:59pm ·
My mother & I went to Poudre Valley Hospital in Fort Collins, CO to get a second opinion. I had brought the written reports & CD with Lily's MRI results. This Doctor is a personal & professional friend of my mothers' and we both wanted honest feedback on what to expect for Lily's quality of life & what exactly her daily care would entail. I was very anxious to get any & all the information on schizencephaly that I could. She started our meeting by expressing sorrow at Lily's profound diagnosis. She explained how physically, emotionally & mentally exhausting it may be to provide care for my daughter, and gave me information on signing over my rights and open adoption. This was something that I had thought about before receiving Lily's diagnosis because obviously she wasn't planned... This was all so surreal, all the unknowns & infinite possibilities for her life, I just knew that I couldn't walk away & entrust her care to someone else.

Lily was still in the NICU at Children's Hospital but I had been meeting with all the service coordinators that I could to make sure that she would receive the maximum amount of therapies as soon as we were home. Lily spent 53 days in the NICU. She was home almost a month sooner than they led me to be believe she would be! Going back and forth from home to the hospital was hard. I rarely slept while I was there, her alarms were going off all the time because she would desat, then her heart rate would jump up, hearing tests, vision tests, neurologists, physical therapists, lactation, & the list goes on & on. I could not wait for her to be home! She was so tolerant of everything & her nurses kept telling me that she didn't present as most neurologically deficient babies. She came home on 1L of oxygen for the mandatory 30 days because of our elevation here in Denver, CO & her being premature & a multi vitamin supplement that she took orally with her bottle feedings. Lily has been healthy & we have been fortunate to not have many issues. Reflux & aspiration were the first noticeable problem, then she started having seizures.

Early Intervention provided Physical, Occupational & Speech Therapists that I got to interview & select to come to my home & work with Lily. She struggled to open her hands, track anything visually, hold her head up & drink from a bottle. She would also get extremely congested, I constantly was suctioning her nose, running a vaporizer & trying to keep her hydrated but eating was such a struggle. Every moment that she was awake I spent trying to feed her. She was burning more calories trying to eat than she was storing. For every 6 oz she drank she threw up 5 oz, then would be asleep for 40 minutes then wake up starving. This didn't happen with every feed but vomiting at least 3 times a day. Her therapists & I made light boxes for her to lay in, utilized pinwheels, bells,any crackly sounding or reflective materials, kinesiology tape, color therapy, sound therapy, aromatherapy, I used exfoliating gloves to "dry rub" all over her body to increase her bodies awareness & increase blood flow, side lying with correct body alignment to encourage mid line play, strengthening positions... On top of watching for seizure activity, doing her therapies & stressing about paying my bills; looking back I don't know how we made it through the days!
MRI scan

Schiz Kid Highlight On Lily Part 3

by Tricia SchizencephalyAwareness Dennis on Wednesday, May 2, 2012 at 2:56pm ·
Schizencephaly is a big scary sounding word, coupled with all these specialists telling you they don't really know that much about it is terrifying! Lily's biological father has never seen her or expressed the desire to understand what we go through on a daily basis. Without the support of my mom, step dad & boyfriend I don't know how I would have been able to make it through the very hard first months. I am a strong person & have always been very optimistic & positive about Lily.

I have tried my hardest to be the best advocate for her & make sure she has every opportunity to experience life. The hardest decision I have yet had to make for her was a surgical procedure. It took me 23 months to go forward with a g tube placement & nissen fundoplication. I was spending 9-11 hours a day feeding her, she wouldn't sleep for longer than 4 hours at a time, I was going to school to become a CNA and then she started having seizures. I was worried that with her reflux she wasn't retaining her seizure medicine & she was also not gaining weight. In my mind if you aren't getting the correct nutrition your development mentally & physically is affected, sleep patterns & you're temperament suffer. Lily deserved better than me just cleaning up her vomit & trying to feed her as much as possible the next time she had the strength to eat. I felt like a complete failure, I mean what kind of mother can't feed her own child?! I so desperately wanted her to one day just be able to drink from a bottle safely, and to be able to have some "normalcy". Now though I see her smiling, laughing, exploring the world & being so much more engaged, I truly wish I would've had this procedure done sooner. We still work on introducing foods to her everyday with different textures, purees & thickened nectars. We're currently working on using a straw & blowing bubbles.

In December 2010 previous to her gtube being placed she had Strabismus surgery. Lily's eyes, especially her left one, were constantly turned in. This surgery cut the muscles in the inner eye so that they would no longer cross, making her eyes sit level. The Ophthalmologist held the die up to my eye so that I could see the degree that her eyes were turned & there is no possible way she could have focused on anything, near or far! Just try it. Cross your eyes & try to focus on something, then move your head... Gives me a headache just thinking about that day! Lily had a bad reaction to the anesthesia & stopped breathing several times but other than that & blood shot eyes for several days, within a week I noticed her nystagmus (eyes shaking) diminishing, I felt she was able to track more effectively, neck strength increased & an improvement in her balance while supported sitting & tummy time.

Both of these procedures were done to improve the quality of her life but were not medically necessary. I can't help but feel that if my daughter was able to vocalize exactly how she felt, or explain how she understands her environment, that she would get better treatment. It is a terrible feeling to doubt everything you are doing. Is my daughter happy? Yes I think she is. It is evident in the sound of her laughter when being tickled, played with or talked to by her siblings, her beautiful smile or her sounds of distress when you walk away from her, or she reaches out & touches something that she wasn't expecting or didn't know was there, when we go places & she hears a new voice or feels the rain & wind on her face. She loves her life because she knows nothing else! I only hope she will always be so pure & happy. That is what I strive to provide for her everyday.

Lily in her Crawler

bath chair in the pool
Lily eating after her Gtube

Monday, April 23, 2012

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, OUCH! in 2005.
Timmy is a welcomed member of the South Park crew, teased, tormented and adored even by the ill-tempered bully, Cartman. Timmy isn't just a happy-go-lucky kid, but has a playfully maniacal side.
Upon introduction to South Park's newest crip, Jimmy (a shaggy-haired charmer on crutches who wins the gang over with his stand-up comedy act), in the episode "Cripple Fight," Timmy becomes noticeably jealous and even plots to have Jimmy killed. A knock-drown, drag-out fight ensues between the boys as yet another example of just how far Parker and Stone are willing to go. However, the episode resolves with the boys joining forces to become allies. The duo even become accepted by the street gang, the Crips, in a later episode titled "Krazy Kripples."
As audience members, we hoped for Timmy's success in using 'Gobbles', a turkey with a physical limitation, in a holiday production of the Helen Keller story. We thrust our fists into the air when he snagged a spot as front man in the thrash metal band "The Lords of the Underworld," and nodded our heads in happy agreement when his bandmates complained, "Timmy gets all the chicks." Timmy never loses face, and the invitation to laugh with him is constant.
Part of the appeal of characters like Timmy is that they give people the opportunity to start a dialogue about what's acceptable and what's just downright offensive.

Sunday, April 22, 2012

we love Breakthroughs

Nanomaterials offer hope for cerebral palsy

Rabbits with brain injuries hop again after treatment with dendrimers.
Dendrimers, artificial branched polymers, deliver therapeutic drugs to inflamed brain cells.
By tacking drugs onto molecules targeting rogue brain cells, researchers have alleviated symptoms in newborn rabbits that are similar to those of cerebral palsy in children. Cerebral palsy refers to a group of incurable disorders characterized by impairments in movement, posture and sensory abilities.
In general, medicines tend to act broadly rather than influence certain sets of cells in the brain. “You don’t expect large molecules to enter the brain, and if they do, you don’t expect them to target specific cells, and immediately act therapeutically — but all of this happened,” says study co-author Rangaramanujam Kannan, a chemical engineer at the Johns Hopkins University School of Medicine in Baltimore, Maryland. The paper is published today in Science Translational Medicine1.
According the US Centers for Disease Control and Prevention, approximately 1 in 303 children have cerebral palsy by age 8, which usually results from neurological damage in the womb, caused by, for example, a kink in the umbilical cord that briefly dimishes the foetus' oxygen, or maternal infection. Such injuries lead to the activation of immune cells in the brain called microglia and astrocytes, which cause further inflammation and exacerbate the damage.
Calming the cells is difficult, because anti-inflammatory drugs don’t easily cross the blood–brain barrier. And those that do tend to diffuse nonspecifically.
“What’s amazing here is that the authors target the drug directly to the microglia,” says Mike Johnston, a paediatric neurologist at the Kennedy Krieger Institute in Baltimore.
The team affixed an anti-inflammatory drug, N-acetyl-L-cysteine (NAC), to synthetic, snowflake-shaped molecules called dendrimers, and injected the conjugates into the bloodstream of newborn rabbits with experimentally injured brains. The dendrimers transported the drug across the blood–brain barrier and released it directly into the activated microglia and astrocytes, halting further inflammation and improving motor function. Control rabbits given NAC alone lost additional brain cells and stumbled in their hops.
The cause of the dendrimers’ attraction to immune cells is unknown. Don Tomalia, director of the National Dendrimer Nanotechnology Center in Mt Pleasant, Michigan, who invented dendrimers in 1979, says, “It’s a mystery as to why these dendrimers intrinsically target inflamed microglia and astrocytes, but it’s brilliant that this happens.”
Taming brain inflammation with targeted drugs would add a sorely needed alternative to current therapies for babies born at risk of cerebral palsy. At the moment, newborns with signs of a brain injury — such as seizures or problems breathing or feeding — are often kept with a reduced body temperature of 33.5 °C for three days, which reduces their chance of developing the disorder by 40%, says Johnston.
Sujatha Kannan, a paediatrician at Johns Hopkins School of Medicine and an author of the study, adds that the new approach could be combined with another potential treatment for cerebral palsy — stem-cell therapy to rebuild damaged nerve tissue. “We feel the best approach would be to suppress ongoing inflammation, and then add on regenerative therapy with stem cells,” she says.
Furthermore, because researchers have recently found that microglia have a role in other neurological ailments, such as multiple sclerosis and Alzheimer’s disease2, the finding could be applied in other contexts. Already, dendrimers are being used in studies on the treatment of diseases ranging from genital herpes to cancer. “People told us not to bother with this experiment because no one thought you could release drugs directly into immune cells in the brain,” says Kannan, who reported previously that dendrimers injected into rats' eyes targeted microglia3. “But somehow,” he says "these dendrimers are special.”


  1. Kannan, S. et alSci. Trans. Med. 4, 130ra46 (2012).
    Show context
  2. Minagar, A. et alJ. Neurological Sciences. 2021323. (2002).
    Show context
  3. Iezzi, R. et alBiomaterials. 3397988, (2012).
    Show context


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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 hydrocephalus, a surgically implanted tube, called a shunt, is often used to divert fluid to another area of the body where it can be absorbed.[1]

  1.  NINDS Schizencephaly Information Page. NINDS. May 6, 2010 Available at: Accessed September 28, 2011.
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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 world would be like without themseves as the main attraction. well let me break down what my life would be like without knowing schizencephaly.....or what life was like without noah
 I would be selfish, never for once thinking about the fact i could not go out with friends or even plan anything that did not involve noah and the fact everything has to revolve around his life

I would work  a 9 to 5 and maybe go to college full time instead of making sure I can work from home and take online classes to make ends meet

Probably I would still be married and have two people helping instead of the fact I have to explain my situation right away because I have zero time for a drink or a night out without telling someone the fact I rarely do so and how precious my time is

I would never have seen a seizure let alone seen someone have one and freak the hell out!!!! 11 yrs ago I was teaching wakeboarding and singing in a band!! no clue what being a caregiver or a person that could be the link between life and death or being sober 24/7 was all about!

I could a normal human, not for one minute knowing what people go through with wheelchairs and shopping carts

I could not read stuff like this......because it didnt effect my life

I would not know senators and drs and therapists by first name. and would never have been interested in things like that to begin with

I would not get sad everytime another birthday went by because Noah will outlive me   keeps a mom up all night...worst fear ever!

I would never go to church...not that I do now but at least I believe in something because I know That It has to be bigger than this

I would not cry everytime I saw a kid like noah pass away, I feel guilt and anger I do not and have not done what I need to to bring a stop to this

so everyday I will be posting something I am grateful for and noahs link. I will also be posting a fact abut schizencephaly that I did not have when he was born because There were only 4000 counted when he was born.!

my little man is lucky to be awake everyday. two years ago he died. for 30 seconds he died from a seizure that was 45 minutes long so I think of you want to be my friend and want to be some business connection You need to understand why I even joined facebook to begin with

 Be grateful your kids can say I love you. many parents I talk to on a daily basis with kids like this may never even say it let alone know the meaning....think about that deeply for a few minutes. I am so happy I have the ability to say I love you and mean it. and noah has taught me to be careful about using the word without thinking. when he first said I love you it was the happiest day of my life on earth. But too many of us use it, abuse it and waste the meaning, wait till some kid that cannot walk, talk or have an abilty to ever ctch a ball says it. then and only then will you think about it the way I do

I am a little upset with my friends that never for one second think about the stress and bearing noah has in my life.

I have fought so hard for him, since day one at 5 months pregnant being told I should abort to losing my dad to suicide because he said it was too hard. I have made it and will spend my life making sure noah and schizencephaly are a part of everyone that knows me lives.

if you can for one second think how would your life be different if you had a child that you could not describe a sunset to. Cannot understand what it means to run, jump or sing, no clue, noah will never understand these things because he will never have a chance unless more people take an effort and help learn about it. and yes I am human and it pisses me off. over 1900 friends and hardly 600 like noahs page or even ask me about him. if there is one thing in life I have learned it is facing the unknown and understanding I am only here for a blink.

so here is my final comment about the subject. You never will know when breast cancer or Autism will touch you and God Bless you if it does, but do not think for a minute something like this will not either. because It can. I adopted Noah out because his father had me convinced I could not deal with this disability, and by far the most under researched and saddest and varying I have read about. I had to fight for 4 months to get noah back and I did get him back. because I knew Nothing in this lifetime would ever be worth the pain I felt never seeing him again
 the day I saw him after 4 months was his first smile and the foster mom said to me " omg I did not think he could smile" that was the first time I knew what love was and when I let go of being selfish. every smile, hug and hurt is mine now

my schiz family I will keep on. but understand I am a mom that will never shut up or stop being what I need to be for this. I encourage all of you to comment and tell me all about each child . I know the stories but I want everyone to know because if you were anyone or anywhere like I was 11 yrs ago and still today it is meesed the hell up ..... we need more research and we need people to step up. Tonight BTW I did ask A pretty inportant person if he would help with the 501 for schiz and I still need a few parent. ones that can stay at home and devote time to schiz.....or ones that cannot stay at home but understand what 501 c's are about

we have a person willing to help with getting this disorder known now we need parent that want to help in battling it with me

everyone on my page that does not like noahs page is just a superficial friend at this time so pardon me if I refuse to like your status or do your events.