I picked my Ornament for 2011 "Hello Kitty", she's my favorite
Kearstyn the Amazing Story of Love, Healing, Confidence and Survival. Acute ischemic stroke in a pediatric patient is a complex disease with a wide variety of etiologies that are FAR different from adults. This Disease is rare, and is a real phenomenon with potentially devastating and ongoing challenges. Hemiplegia often impacts Social, Emotional and Confidence in young people. A TRUE SUCCESS STORY and the Adventure Continues
Wednesday, December 21, 2011
A Serious Conversation with Santa
Deep Conversation with Santa;
Conversation went something like this. . .
Santa . . I have tried very hard this year, I have been naughty a few times
but I told mom I was sorry; Mommy says I need to make better choices; I know I need
to listen to mommy better. Santa says, "Kearstyn, I know you are trying
and that is all Mommy and Grandma and I want from you. You are very smart and
we have faith in you. Now because I know you are a good little girl what would you like
for me to bring you for Christmas... Well Santa,I would really like a Lolly Lopsy Doll, and a basketball and
Nintendo Ds games. I really like Hello Kitty too... Kearstyn says, Thank you Santa
for my Bike and my scooter last year.
Thursday, December 1, 2011
Friday, October 28, 2011
Friday, October 21, 2011
Amazing Hemi Child * * * hemichildkearstyn.blogspot.com: FUNDRAISING ACTIVITY
Amazing Hemi Child * * * hemichildkearstyn.blogspot.com: FUNDRAISING ACTIVITY: http://www.fasttrackfundraising.com/ Fundraising is currently being raised; Amazing enough, participation is spreading fairly quickly. It just takes people talking, caring and participating to affect change. Thank you to everyone who has contacted us with wanting to help. You are all amazing. Special Thank you to BAILEY, you are a sweetheart. ...
Amazing Hemi Child * * * hemichildkearstyn.blogspot.com: 1rst Quarter Report Card 2011
Amazing Hemi Child * * * hemichildkearstyn.blogspot.com: 1rst Quarter Report Card 2011: YEAH!! Kearstyn, you got 2 (A's) and 1 (B); Good Job!!!!
Sunday, October 16, 2011
Saturday, October 15, 2011
Monday, September 26, 2011
GLOSSARY: HELPFUL TERMS
Common Cerebral Palsy Terms
This glossary should help provide answers to your basic questions about cerebral palsy. It can’t answer every question. Contact us if you have more questions about your child’s cerebral palsy, or if you would like to learn more about protecting your child’s right to Benefits4Life.A-C | D-F | G-L | M-R | S-Z
- ABO blood type incompatibility
- ABO Blood Type Incompatibility results when the blood type of the fetus, or developing child, differs from the blood type of the mother. This can occur if (1) the mother is type O and the fetus is either B, A, or AB, (2) the mother is A and the fetus is B or AB, or (3) the mother is B and the fetus is A or AB.
- adaptive equipment
- Special equipment designed to aid individuals with disabilities in accomplishing tasks. Examples include wheelchairs, walkers, communication aids, and specialized tools
- apgar score
- A numbered score doctors use to assess a baby’s physical state at the time of birth.
- applied or assistive technology
- Any item, device, software, or piece of equipment which is used to maintain or improve the functional capabilities of individuals with disabilities. Examples range from grab bars in accessible bathroom stalls to specialized screen reading software for individuals with visual impairments.
- apraxia
- Impaired ability to carry out purposeful movements in an individual who does not have significant motor problems.
- asphyxia
- Lack of oxygen due to trouble with breathing or poor oxygen supply in the air.
- bile pigments
- Yellow-colored substances produced by the human body as a by-product of digestion.
- ataxic cerebral palsy
- Cerebral palsy characterized by low muscle tone and poor coordination.
- athetoid cerebral palsy
- Cerebral palsy caused by damage to the cerebellum or basal ganglia which may cause involuntary movements in the face, arms, and trunk of individuals affected by this type of Cerebral palsy.
- caesarean section
- The surgical removal of a child from it’s mother’s womb by opening the abdominal and uterine walls.
- central nervous system
- The human body system consisting of the spinal chord and the brain which sends signal throughout the body to direct movement and organ function.
- cerebral
- Relating to the two hemispheres of the human brain.
- clonus
- An abnormality in neuromuscular activity characterized by rapidly alternating muscular contraction and relaxation.
- computed tomography (CT)
- An imaging technique that uses X rays and a computer to create a picture of the brain’s tissues and structures.
- congenital
- Present at birth.
- contracture
- A condition in which muscles become fixed in a rigid, abnormal position causing distortion or deformity.
- developmental malformations
- Occasionally, something may disrupt the brain’s development process. A brain in utero may fail to develop the usual number of brain cells, communication between cells may be impaired, or brain cells may not migrate to the areas they are supposed to. Causes of these malformations can include genetic disorders, chromosome abnormalities with either too much or too little genetic material, or faulty blood supply to the brain. Developmental brain malformations in the areas of the brain which control voluntary movement may cause cerebral palsy.
- developmental milestones
- The averages ages at which children develop certain skills or abilities. Tracking these milestones enables you to observe any problems in your child’s development.
- down syndrome
- A chromosomal abnormality caused by an accident in cell development which creates 47 instead of the normal 46 chromosomes which alters the normal development of the body and brain.
- dysarthria
- Problems with speaking caused by difficulty moving or coordinating the muscles needed for speech.
- electroencephalogram (EEG)
- A technique for recording the pattern of electrical currents inside the brain.
- electromyography
- A special recording technique that detects muscle activity.
- epilepsy
- A symptom of brain dysfunction characterized by periodic, recurrent seizures.
- erb’s palsy
- A form a paralysis caused by traumatic injury to the upper brachial plexus. This occurs most commonly during childbirth due to forcible traction during delivery. Indicators of Erb’s palsy include loss of sensation in the arm and paralysis and atrophy of the muscles in the arm. Usually only effects one side of the body.
- failure to thrive
- A condition characterized by lag in physical growth and development.
- fetal distress
- Also called “Hypoxia”, the term indicates a situation when your baby cannot breathe.
- forceps
- Tools used to grip a baby’s head and guide it out of the birth canal.
- gait analysis
- A technique that uses camera recording, force plates, electromyography, and computer analysis to objectively measure an individual’s pattern of walking.
- gastrostomy
- A surgical procedure to create an artificial opening in the stomach.
- hemianopia
- Defective vision or blindness that impairs half of the normal field of vision.
- hemiparetic tremors
- Uncontrollable shaking affecting the limbs on the spastic side of the body in those who have spastic hemiplegia.
- hypertonia
- Increased tone.
- hypotonia
- Decreased tone.
- hypoxic-ischemic encephalopathy
- Brain damage caused by poor blood flow or insufficient oxygen supply to the brain.
- intraventricular hemorrhage
- Bleeding into the fluid spaces (or “ventricles”) within the brain or bleeding in areas near the ventricles.
- involuntary movement
- Movement not under conscious control of the brain. Your heart beat is an involuntary movement. When involuntary movements affect normally controlled parts of the body, such as limbs or mouths, these can be seriously detrimental to your ability to function normally.
- jaundice
- A blood disorder caused by the abnormal buildup of bile pigments in the bloodstream.
- little’s disease
- The original name for Cerebral palsy, as defined by English surgeon William John Little in 1843.
- magnetic resonance imaging (MRI)
- an imaging technique which uses radio waves, magnetic fields, and computer analysis to create a picture of body tissues and structures.
- meningitis
- An infection of the fluid of a person’s spinal cord and the fluid which surrounds the brain.
- mixed cerebral palsy
- A form of cerebral palsy which includes affects of both spastic cerebral palsy and athetoid cerebral palsy.
- motor function
- The parts of the human body which enable people to move. Fine motor skills includes the use of small muscles, such as hands; gross motor skills represents the larger muscles, such as legs and arms.
- neonatal hemorrhage
- Bleeding of brain blood vessels in the newborn.
- orthotic devices
- Special devices, such as splints or braces, used to treat problems of the muscles, ligaments, or bones of the skeletal system.
- paresis or plegia
- Weakness or paralysis. In cerebral palsy, these terms are typically combined with another phrase that describes the distribution of paralysis and weakness, e.g., paraparesis.
- palsy
- Paralysisor problems in the control of voluntary movement.
- reflexes
- Movements that the body makes automatically in response to a specific cue.
- Rh incompatibility
- A blood condition in which antibodies in a pregnant woman’s blood can attack fetal blood cells, impairing the fetus’s supply of oxygen and nutrients.
- rubella
- Also known as German measles, rubella is a viral infection that can damage the nervous system in the developing fetus.
- selective dorsal root rhizotomy
- A surgical procedure in which selected nerves are severed to reduce spasticity in the legs.
- spastic cerebral palsy
- The most common form of Cerebral palsy, it causes affected children to have stiff and jerky movements.
- spastic diplegia
- A form of cerebral palsy in which both arms and both legs are affected, the legs being more severely affected.
- spastic hemiplegia (or hemiparesis)
- A form of cerebral palsy in which spasticity affects the arm and leg on one side of the body.
- spastic paraplegia (or paraparesis)
- A form of cerebral palsy in which spasticity affects both legs but the arms are relatively or completely spared.
- spastic quadriplegia (or quadriparesis)
- A form of cerebral palsy in which all four limbs are affected equally.
- stereognosia
- Difficulty perceiving and identifying objects using the sense of touch.
- strabismus
- Misalignment of the eyes.
- ultrasonography
- A technique that bounces sound waves off of tissues and structures and uses the pattern of echoes to form an image, called a sonogram.
Contact us if you have questions about your child’s cerebral palsy, or if you would like to learn more about protecting your child’s right to Benefits4Life.
What is Cerebral Palsy?
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Sunday, September 25, 2011
Link between gifted children and lack of self esteem
- The context of measuring disability: does it matter whether capability or performance is measured? [J Clin Epidemiol. 1996]
- [Link between depression and academic self-esteem in gifted children]. [Encephale. 2007]
- Children's perceptions of their use of assistive devices in home and school settings. [Disabil Rehabil Assist Technol. 2009] Children's perceptions of their use of assistive devices in home and school settings.Huang IC, Sugden D, Beveridge S. Disabil Rehabil Assist Technol. 2009 Mar; 4(2):95-105.
- The health and well-being of caregivers of children with cerebral palsy. [Pediatrics. 2005] The health and well-being of caregivers of children with cerebral palsy.Raina P, O'Donnell M, Rosenbaum P, Brehaut J, Walter SD, Russell D, Swinton M, Zhu B, Wood E. Pediatrics. 2005 Jun; 115(6):e626-36.
- Do the abilities of children with cerebral palsy explain their activities and participation? [Dev Med Child Neurol. 2006]
Hemiplegia according to the Encyclopedia
Hemiplegia
From Wikipedia, the free encyclopedia
Jump to: navigation, search
Hemiplegia /he.mə.pliː.dʒiə/ is total paralysis of the arm, leg, and trunk on the same side of the body. Hemiplegia is more severe than hemiparesis, wherein one half of the body has less marked weakness.[1] Hemiplegia may be congenital or acquired from an illness or stroke.
Hemiplegia is not an uncommon medical disorder. In elderly individuals, strokes are the most common cause of hemiplegia. In children, the majority of cases of hemiplegia have no identifiable cause and occur with a frequency of about one in every thousand births. Experts indicate that the majority of cases of hemiplegia that occur up to the age of two should be considered to be cerebral palsy until proven otherwise.[2]
Causes
The most common cause of hemiplegia is stroke. Strokes can cause a variety of movement disorders, depending on the location and severity of the lesion. Hemiplegia is common when the stroke affects the corticospinal tract. Other causes of hemiplegia include spinal cord injury, specifically Brown-Séquard syndrome, traumatic brain injury, or disease affecting the brain. As a lesion that results in hemiplegia occurs in the brain or spinal cord, hemiplegic muscles display features of the Upper Motor Neuron Syndrome. Features other than weakness include decreased movement control, clonus (a series of involuntary rapid muscle contractions), spasticity, exaggerated deep tendon reflexes and decreased endurance.
It is well known that the incidence of hemiplegia is a lot higher in premature babies than term babies. There is also a high incidence of hemiplegia during pregnancy and experts believe that this may be related to either a traumatic delivery, use of forceps or some event which causes brain injury.[3]
Hemiplegia in adults include trauma, bleeding, brain infections and cancers. Individuals who have uncontrolled diabetes, hypertension or those who smoke have a higher chance of developing a stroke. Weakness on one side of the face may occur and may be due to a viral infection, stroke or a cancer.[4]
Common causes by etiology
- Vascular: cerebral hemorrhage,[5] stroke, diabetic neuropathy
- Infective: encephalitis, meningitis, brain abscess
- Neoplastic: glioma-meningioma
- Demyelination: disseminated sclerosis, lesions to the internal capsule
- Traumatic: cerebral lacerations, subdural hematoma rare cause of hemiplegia is due to local anaesthetic injections given intra-arterially rapidly, instead of given in a nerve branch.
- Congenital: cerebral palsy
- Disseminated: multiple sclerosis
- Psychological: parasomnia (nocturnal hemiplegia)[6]
Hemiplegia means severe weakness of the limbs on one side of the body but the specific features can vary tremendously from person to person. Problems may include:
- Difficulty with gait
- Difficulty with balance while standing or walking
- Having difficulty with motor activities like holding, grasping or pinching
- Increasing stiffness of muscles
- Muscle spasms
- Difficulty with speech
- Difficulty swallowing food
- Significant delay in achieving developmental milestones like standing, smiling, crawling or speaking
- The majority of children who develop hemiplegia also have abnormal mental development
- Behavior problems like anxiety, anger, irritability, lack of concentration or comprehension
- Emotions- depression
Hemiplegia is not a progressive disorder, except in progressive conditions like a growing brain tumour. Once the injury has occurred, the symptoms should not worsen.
Sudden recovery from hemiplegia is very rare. Many of the individuals will have limited recovery, but the majority will improve from intensive, specialised rehabilitation. Potential to progress may differ in cerebral palsy, compared to adult acquired brain injury. It is vital to integrate the hemiplegic child into society and encourage them in their daily living activities. With time, some individuals may make remarkable progress.
*** Which is why supporting Kearstyn in her effort to bring awareness to the community is a great society encouraging activity, which can benefit many with positive outcomes; community involvement, education awareness, research and prevention. AND FUN!!!
External links
- CHASA Children's Hemiplegia and Stroke Association non-profit organization
- HemiHelp, a UK based childhood hemiplegia (cerebral palsy) charity
- [1] Living with hemiplegia a child's perspective by Katy Roberts who suffers from left sided hemiplegia.
- AHC Kids Dutch website about Alternating Hemiplegia of Childhood
- Spinal Cord Injury Peer Support
- Hemiplegia and associated problems
- Wrong Diagnosis.com General Hemiplegia Info, Tools & Discussion Boards
- Video of hemiplegic gait and other gait abnormalities
- Chedoke-McMaster Stroke Assessment
Saturday, September 24, 2011
Thursday, September 22, 2011
I'm So Happy
Hello People;
I am so happy, I asked mommy to help me send a letter to Ellen. I watch her on TV alot. She is so funny,
she makes me laugh. I dance when she dances. She makes me laugh so much. I send letter to her to help me to make money to help chasa.org. I told mommy, do you think she will write me back? Mommy says, I
do not see why not, if you are sincere and I want to help other kids like me, she would be crazy not to hear me. Mommy says she is proud of me for wanting to do something to help other kids. Doing nice things for others is a good thing. I am going to hand write a list of ideas to earn money for research and education for pediatric stroke (chasa.org). I want kids at school to learn more about kids with stroke. Us Hemi kids are not weird, we are good kids we just need med's. I play the same as they do. I like Nintendo like other kids. I ride my bike, I play with bubbles. I jump rope. I chase my cat. I am a good kid. I just have a hard time with learning, writing, remembering stuff. I just need more help with stuff. I am going to go right now
before it gets dark and go outside and play. Bye Bye
I am so happy, I asked mommy to help me send a letter to Ellen. I watch her on TV alot. She is so funny,
she makes me laugh. I dance when she dances. She makes me laugh so much. I send letter to her to help me to make money to help chasa.org. I told mommy, do you think she will write me back? Mommy says, I
do not see why not, if you are sincere and I want to help other kids like me, she would be crazy not to hear me. Mommy says she is proud of me for wanting to do something to help other kids. Doing nice things for others is a good thing. I am going to hand write a list of ideas to earn money for research and education for pediatric stroke (chasa.org). I want kids at school to learn more about kids with stroke. Us Hemi kids are not weird, we are good kids we just need med's. I play the same as they do. I like Nintendo like other kids. I ride my bike, I play with bubbles. I jump rope. I chase my cat. I am a good kid. I just have a hard time with learning, writing, remembering stuff. I just need more help with stuff. I am going to go right now
before it gets dark and go outside and play. Bye Bye
Sunday, September 18, 2011
Helpful Document regarding Toe Walking
I came across this interested document from J Romkes regarding Toe Walking; This answered alot of my questions that Kearstyn has experienced;
Source
Laboratory for Gait Analysis Basel, University Children's Hospital (UKBB), Burgfelderstrasse 101, CH-4012 Basel, Switzerland. J.Romkes@unibas.chAbstract
This study compares lower extremity muscle activation during gait in patients with hemiplegic cerebral palsy (CP) with healthy subjects mimicking the patients. The purpose was to understand the differences between obligatory toe-walking as observed in hemiplegic CP gait and voluntary toe-walking. The results contribute to a better understanding by distinguishing between primary deviations in muscle activity as a direct consequence of the underlying neurological pathology of hemiplegic CP and secondary, compensatory deviations due to the biomechanics of toe-walking. Surface electromyographic (EMG), kinematic and kinetic data were compared between a group of 12 hemiplegic CP patients and a group of 10 healthy subjects walking normally and when mimicking hemiplegic gait. Integrated 3D gait analysis was performed with simultaneous EMG recordings of the medial gastrocnemius, tibialis anterior, rectus femoris, and semitendinosus muscles bilaterally. The EMG pattern of the toe-walking leg in the mimicking subjects was modified in gastrocnemius and tibialis anterior as compared with normal gait. This modified muscle activation pattern showed strong similarities to that of the patients and therefore can be regarded, at least in part, as activity required for toe-walking. A possible primary gait abnormality was observed in the rectus femoris where the patients showed a burst of EMG activity in mid-swing phase in contrast to the mimicking subjects who showed normal EMG during this phase.- PMID:
- 17275305
- [PubMed - indexed for MEDLINE]
Thursday, September 15, 2011
Monday, September 12, 2011
I'm home from School
Today was very busy at school. But yeah no homework. Mom says I can work on my Blog for a little
while, but not very long since I am really tired. I ate cheese nachos for lunch today and white milk. My friends at school are, J. J and Devony, Anna, they are nice to me, we play together at recess. We talk about girl toys like Barbies, Littlest Pet Shops and Hello Kitty. We talk about my kitty, I tell them she is a pain in the butt and likes to run and chase me. Her name is Tinkerbell, I sometimes call her Tinky, or Bubba's, or Ms Baby. I like to play ball outside, I play kick ball with my friends, I kick it hard. We also like to swing together. Anna says she likes being my friend. The nurse came to class and gave me my meds today, like she does everyday at school. Well I got to go, I want to watch Nick Jr. until dinner time, then I eat, then I take a shower and brush my teeth, put my jammies on and its bedtime. Maybe I can talk more tomorrow. See ya :)
while, but not very long since I am really tired. I ate cheese nachos for lunch today and white milk. My friends at school are, J. J and Devony, Anna, they are nice to me, we play together at recess. We talk about girl toys like Barbies, Littlest Pet Shops and Hello Kitty. We talk about my kitty, I tell them she is a pain in the butt and likes to run and chase me. Her name is Tinkerbell, I sometimes call her Tinky, or Bubba's, or Ms Baby. I like to play ball outside, I play kick ball with my friends, I kick it hard. We also like to swing together. Anna says she likes being my friend. The nurse came to class and gave me my meds today, like she does everyday at school. Well I got to go, I want to watch Nick Jr. until dinner time, then I eat, then I take a shower and brush my teeth, put my jammies on and its bedtime. Maybe I can talk more tomorrow. See ya :)
Cerebral Palsy and Other Helpful Info Links
Links By Subject
Adaptive Therapy Equipment
Abilitations specialized therapy tools/toys and adaptive equipment http://www.abilitations.com/
Enablemart carries the latest assistive technology products and software http://www.enablemart.com/
ADDitude Magazine Understanding the Symptoms, Diagnosis & Treatment http://www.additudemag.com/
Ages and Stages Questionnaire
The Ages and Stages Questionnaires® (ASQ) Third Edition is a questionnaire designed to help parents check their child's development. Parents can use the results of the ASQ to help talk with pediatricians, teachers or other professionals if they have concerns about their child's development. https://asqoregon.com/index.php?lang=en
CDC Online source for credible information http://www.cdc.gov/ncbddd/actearly/index.html
CDC Take the developmental milestones quiz quiz
CDC Has information for doctors, healthcare providers, families. Look over the facts for any concerns you may have facts
National Center for Learning Disabilities provides essential information to parents, professionals and individuals with learning disabilities, promotes research and programs to foster effective learning and advocates for policies to protect and strengthen educational rights and opportunities http://www.ncld.org/
Karen Gaffney Foundation dedicated to championing the journey to full inclusion in families, schools, communities and the workplace for people with Down syndrome or other developmental disabilities http://www.karengaffneyfoundation.com/Bridgeway House is an organization helping children and families by providing treatments, courses, and support to families and individuals affected by autism and related disabilities http://www.bridgewayhouse.org/
Foley Vision Center Vision Therapy and Pediatric Eye Doctors http://www.foleyvisioncenter.com/
Lifetime Eye Care Vision Therapy and Pediatric Eye Doctors http://www.lifetimeeyecare.net/Family Programs & Services
Foundation of Dentistry for the Handicapped donated dental services http://www.nfdh.org/ Special Solutions future care planning for families with special needs children http://www.specialsolutions.org/
Disability Compass provides information on services, products, and special health care resources http://www.disabilitycompass.com/
Lose the Training Wheels is a program that uses unique adapted bikes allowing children to Lose the Training Wheels™ and ride conventional bicycles www.losetrainingwheelspdx.blogspot.com/
Family Support/Consultation
Barbara Avila Consulting- RDI services, Autism and Social Behavioral supports http://www.barbaraavilaconsulting.com/
Diane Frost Wiscarson, P.C. - Legal support for families of children with special needs http://www.wiscarsonlaw.com/
Lana L. Traynor, LLC - Compassionate counsel to families and people with special needs http://www.traynorlawfirm.com/
Occupational Therapy Resources
Handwriting Without Tears® The goal of HWT is to make legible and fluent handwriting an easy and automatic skill for all students http://www.hwtears.com/
Vital Links (Therapeutic Listening®) is an evidence-backed protocol that combines a sound-based intervention with sensory integrative activities to create a comprehensive program that is effective for diverse populations with sensory challenges http://www.vitallinks.net/
Physical Therapy Resources
Hemi-Kids is an email support group where parents of children who have hemiplegia or hemiplegic cerebral palsy share support and information http://www.hemikids.org/
Wheelchair Works provides specialty rehabilitation equipment esp. wheelchairs http://www.wheelchairsworks.com/
United Seating & Mobility provides seating and mobility solutions for people with disabilities http://www.unitedseating.com/
Rifton Adaptive rehab equipment for children with differing abilities http://www.rifton.com/
Sammons Preston Rehabilitation equipment and supplies http://www.sammonspreston.com/
A Step Forward Scoliosis bracing, lower extremity orthotics and foot orthotics http://www.astepforwardpdx.com/
Social Skills Resources
Michelle Garcia Winner, SLP, CCC specializes in developing further understanding and educational strategies for helping persons with social thinking/social communicative challenges http://www.socialthinking.com/
All Kinds of Minds non-profit Institute helps students who struggle with learning measurably improve their success in school and life by providing programs that integrate educational, scientific, and clinical expertise http://www.allkindsofminds.org/
Speech Therapy Resources
Talk Tools products designed to encourage clients to explore shape and texture, increase sensory awareness, and build muscle tone/strength in the jaw, lips, checks, and tongue http://www.talktools.net/
Speech Language Pathology Web sites provide pointers to finding information in the field of Speech Language Pathology http://www.herring.org/
ASHA (American Speech-Language-Hearing Association) is the professional, scientific, and credentialing association for more than 127,000 members and affiliates who are audiologists, speech-language pathologists, and speech, language, and hearing scientists http://www.asha.org/
Visual Supports
Mayer-Johnson enhances learning and human expression for individuals with special needs through symbol-based products, training and services http://www.mayer-johnson.com/
Sandbox Learning can provide children with customized tools that connect them to their goals, their community, and the world around them http://www.sandbox-learning.com/
Do2Learn provides tools and solutions based on scientific research and clinical experience to help those with special learning and treatment needs http://www.do2learn.com/ Cerebral Palsy
United Cerebral Palsy (UCP) is the leading source of information on cerebral palsy and is a pivotal advocate for the rights of persons with any disability http://www.ucp.org/
Hemi-Kids is an email support group where parents of children who have hemiplegia or hemiplegic cerebral palsy share support and information http://www.hemikids.org/
- Adaptive Therapy Equipment
- Ages and Stages Questionnaire
- Cerebral Palsy
- Family Programs & Services
- Family Support/Consultation
- Occupational Therapy Resources
- Physical Therapy Resources
- Regional Early Intervention/Early Childhood
- Social Skills Resources
- Speech Therapy Resources
- Visual Supports
Adaptive Therapy Equipment
Abilitations specialized therapy tools/toys and adaptive equipment http://www.abilitations.com/
Enablemart carries the latest assistive technology products and software http://www.enablemart.com/
ADDitude Magazine Understanding the Symptoms, Diagnosis & Treatment http://www.additudemag.com/
Ages and Stages Questionnaire
The Ages and Stages Questionnaires® (ASQ) Third Edition is a questionnaire designed to help parents check their child's development. Parents can use the results of the ASQ to help talk with pediatricians, teachers or other professionals if they have concerns about their child's development. https://asqoregon.com/index.php?lang=en
CDC Online source for credible information http://www.cdc.gov/ncbddd/actearly/index.html
CDC Take the developmental milestones quiz quiz
CDC Has information for doctors, healthcare providers, families. Look over the facts for any concerns you may have facts
National Center for Learning Disabilities provides essential information to parents, professionals and individuals with learning disabilities, promotes research and programs to foster effective learning and advocates for policies to protect and strengthen educational rights and opportunities http://www.ncld.org/
Karen Gaffney Foundation dedicated to championing the journey to full inclusion in families, schools, communities and the workplace for people with Down syndrome or other developmental disabilities http://www.karengaffneyfoundation.com/Bridgeway House is an organization helping children and families by providing treatments, courses, and support to families and individuals affected by autism and related disabilities http://www.bridgewayhouse.org/
Foley Vision Center Vision Therapy and Pediatric Eye Doctors http://www.foleyvisioncenter.com/
Lifetime Eye Care Vision Therapy and Pediatric Eye Doctors http://www.lifetimeeyecare.net/Family Programs & Services
Foundation of Dentistry for the Handicapped donated dental services http://www.nfdh.org/ Special Solutions future care planning for families with special needs children http://www.specialsolutions.org/
Disability Compass provides information on services, products, and special health care resources http://www.disabilitycompass.com/
Lose the Training Wheels is a program that uses unique adapted bikes allowing children to Lose the Training Wheels™ and ride conventional bicycles www.losetrainingwheelspdx.blogspot.com/
Family Support/Consultation
Barbara Avila Consulting- RDI services, Autism and Social Behavioral supports http://www.barbaraavilaconsulting.com/
Diane Frost Wiscarson, P.C. - Legal support for families of children with special needs http://www.wiscarsonlaw.com/
Lana L. Traynor, LLC - Compassionate counsel to families and people with special needs http://www.traynorlawfirm.com/
Occupational Therapy Resources
Handwriting Without Tears® The goal of HWT is to make legible and fluent handwriting an easy and automatic skill for all students http://www.hwtears.com/
Vital Links (Therapeutic Listening®) is an evidence-backed protocol that combines a sound-based intervention with sensory integrative activities to create a comprehensive program that is effective for diverse populations with sensory challenges http://www.vitallinks.net/
Physical Therapy Resources
Hemi-Kids is an email support group where parents of children who have hemiplegia or hemiplegic cerebral palsy share support and information http://www.hemikids.org/
Wheelchair Works provides specialty rehabilitation equipment esp. wheelchairs http://www.wheelchairsworks.com/
United Seating & Mobility provides seating and mobility solutions for people with disabilities http://www.unitedseating.com/
Rifton Adaptive rehab equipment for children with differing abilities http://www.rifton.com/
Sammons Preston Rehabilitation equipment and supplies http://www.sammonspreston.com/
A Step Forward Scoliosis bracing, lower extremity orthotics and foot orthotics http://www.astepforwardpdx.com/
Social Skills Resources
Michelle Garcia Winner, SLP, CCC specializes in developing further understanding and educational strategies for helping persons with social thinking/social communicative challenges http://www.socialthinking.com/
All Kinds of Minds non-profit Institute helps students who struggle with learning measurably improve their success in school and life by providing programs that integrate educational, scientific, and clinical expertise http://www.allkindsofminds.org/
Speech Therapy Resources
Talk Tools products designed to encourage clients to explore shape and texture, increase sensory awareness, and build muscle tone/strength in the jaw, lips, checks, and tongue http://www.talktools.net/
Speech Language Pathology Web sites provide pointers to finding information in the field of Speech Language Pathology http://www.herring.org/
ASHA (American Speech-Language-Hearing Association) is the professional, scientific, and credentialing association for more than 127,000 members and affiliates who are audiologists, speech-language pathologists, and speech, language, and hearing scientists http://www.asha.org/
Visual Supports
Mayer-Johnson enhances learning and human expression for individuals with special needs through symbol-based products, training and services http://www.mayer-johnson.com/
Sandbox Learning can provide children with customized tools that connect them to their goals, their community, and the world around them http://www.sandbox-learning.com/
Do2Learn provides tools and solutions based on scientific research and clinical experience to help those with special learning and treatment needs http://www.do2learn.com/ Cerebral Palsy
United Cerebral Palsy (UCP) is the leading source of information on cerebral palsy and is a pivotal advocate for the rights of persons with any disability http://www.ucp.org/
Hemi-Kids is an email support group where parents of children who have hemiplegia or hemiplegic cerebral palsy share support and information http://www.hemikids.org/
PART III THE TRUE LOVE STORY
Mom met with the Neurologist and he told mom more information and expectations. He told mom that I was improving miracously. He said "I am not sure what you're doing or what you're telling her, but keep doing it, it appears to be working"... Mom thanked God for his love and mercy and could not wait to get back to me and spend me time with me. The same day before mom was ready to go home for the night the nurse came by. Mom says she sat next to mom and gave her words of incouragement and talked to mom about faith and hope. Mom says the nurse told her that all the Dr.'s and Nurses all say that I am so beautiful and will grow up to be an Amazing Child. The nurse said, "She is a Strong one". I am and I come by it naturally is what Grandma says, all the time. The next day when mom came for her visit, there was more improvement. The Dr. came to see mommy and he told mommy that I continue to improve and this night under very close supervision and monitoring they were going to see how I would do with out the Oxygen line. The Dr. told mommy that if I could breath on my own without it through the night and the next day until mommy came to visit with good results, I might get to go home. Mommy says she cried with excitement. ***Got to go for right now, will write more soon***
Sunday, September 11, 2011
More Helpful Links of Information & Families in TX
NEW Kids Have Strokes Blog kidshavestroke.org
http://www.CHASA.org
http://www.cerebralpalsy.org/
http://www.CHASA.org
http://www.cerebralpalsy.org/
http://www.specialtravelers.org/location.htm
www.tea.state.tx.us/special.ed
E-mail: kclayton@tmail.tea.state.tx.us
STATE VOCATIONAL REHABILITATION AGENCY: E-mail: max.arrell.rehab@rehab.state.tx.us
STATE DEVELOPMENTAL DISABILITIES PLANNING COUNCIL
Roger A. Webb, Executive Director
Texas Planning Council for DD
E-mail: TXDDC@rehab.state.tx.us
STATE EDUCATION AGENCY RURAL REPRESENTATIVE
Gene Lenz, Senior Director
Special Education
Texas Education Agency
E-mail: sped@tea.tetn.net
Web: www.tea.state.tx.us/special.ed
Cerebral Palsy
Bill Knudsen, President & Chief Executive Officer
United Cerebral Palsy of Texas
7301 Burnet Road, Suite 102-PMB 565
Austin, TX 78757
(512) 468-7645; (800) 999-1898
Email: billknudsen@ucptexas.com
Epilepsy
Donna Stahlhut, Executive Director
Epilepsy Foundation of Southeast Texas
2650 Fountain View, Suite 316
Houston, TX 77057
(713) 789-6295; (888) 548-9716 (in TX)
E-mail: dstahlhut@MSN.com
Web: http://www.efset.org/
Epilepsy Foundation of Greater North Texas
2906 Swiss Avenue
Dallas, TX 75204
(214) 823-8809; (800) 447-7778 (in TX only)
E-mail: info@efgnt.org
Web: http://www.efgnt.org/
Learning Disabilities
Ann Robinson, Coordinator
Learning Disabilities Association of TX
1011 West 3lst Street
Austin, TX 78705
(512) 458-8234; (800) 604-7500 (TX only)
E-mail: LDAT@compuserve.com
OTHER DISABILITY ORGANIZATIONS
Rebecca Rabinowitz, President
Easter Seals Greater Dallas, TX
4443 N. Josey Lane
Carrollton, TX 75010
(972) 394-8900; (800) 580-4718
E-mail: rebecca@easterseals.com
Web: http://www.easterseals.com/
Texas Advocates Supporting Kids with Disabilities (TASK)
P.O. Box 162685
Austin, TX 78716
(512) 310-2102 (V or Fax)
E-mail: ASKTASK@AOL.com
EXTREMELY HELPFUL ORGANIZATIONS AND SINCERELY WILLINGLY TO HELP
www.tea.state.tx.us/special.ed
E-mail: kclayton@tmail.tea.state.tx.us
STATE VOCATIONAL REHABILITATION AGENCY: E-mail: max.arrell.rehab@rehab.state.tx.us
STATE DEVELOPMENTAL DISABILITIES PLANNING COUNCIL
Roger A. Webb, Executive Director
Texas Planning Council for DD
E-mail: TXDDC@rehab.state.tx.us
STATE EDUCATION AGENCY RURAL REPRESENTATIVE
Gene Lenz, Senior Director
Special Education
Texas Education Agency
E-mail: sped@tea.tetn.net
Web: www.tea.state.tx.us/special.ed
Cerebral Palsy
Bill Knudsen, President & Chief Executive Officer
United Cerebral Palsy of Texas
7301 Burnet Road, Suite 102-PMB 565
Austin, TX 78757
(512) 468-7645; (800) 999-1898
Email: billknudsen@ucptexas.com
Epilepsy
Donna Stahlhut, Executive Director
Epilepsy Foundation of Southeast Texas
2650 Fountain View, Suite 316
Houston, TX 77057
(713) 789-6295; (888) 548-9716 (in TX)
E-mail: dstahlhut@MSN.com
Web: http://www.efset.org/
Epilepsy Foundation of Greater North Texas
2906 Swiss Avenue
Dallas, TX 75204
(214) 823-8809; (800) 447-7778 (in TX only)
E-mail: info@efgnt.org
Web: http://www.efgnt.org/
Learning Disabilities
Ann Robinson, Coordinator
Learning Disabilities Association of TX
1011 West 3lst Street
Austin, TX 78705
(512) 458-8234; (800) 604-7500 (TX only)
E-mail: LDAT@compuserve.com
OTHER DISABILITY ORGANIZATIONS
Rebecca Rabinowitz, President
Easter Seals Greater Dallas, TX
4443 N. Josey Lane
Carrollton, TX 75010
(972) 394-8900; (800) 580-4718
E-mail: rebecca@easterseals.com
Web: http://www.easterseals.com/
Texas Advocates Supporting Kids with Disabilities (TASK)
P.O. Box 162685
Austin, TX 78716
(512) 310-2102 (V or Fax)
E-mail: ASKTASK@AOL.com
EXTREMELY HELPFUL ORGANIZATIONS AND SINCERELY WILLINGLY TO HELP
Part II: True Love Story
After quite some time, mom started to become anxious and did not want to stay in bed in rest. She proceeded to ring the buzzer to the nurses station. Her nurse came in and asked what she could do to help. Mom states I need to know what is going on. I want to see me daughter. The nurse started to explain to mom " you need to stay in bed and rest, you went through a tramatic experience, according to your chart you experienced a large tear requiring 30 stitches and Dr. has notes saying you must rest. Mom was not cooperative and insisted on seeing her daughter. Nurse says, " I'll go speak with the Dr. and I'll be right back". Thirty minutes or so passed and nurse returns with Wheelchair. Mom was taken down to NICU where she would stay for many many hours. Hours flew by like minutes with all the communication with Dr.'s, Specialist and Nurses and Attending Staff. Mom was taken to bedside of daughter where she broke down and almost fell to the floor. If it were not for the Nurse standing behind her, mom would have hit the floor. The tears flowing down her face as she looked at her little baby girl, bundled in a blanket, at the foot of her bed a little pink sign saying "Kearstyn -----, 8 lbs 15.4oz born August 1, 20--, 21 inches. The nurses created beautiful little picture drawings and put them around her bedside, notes of love and prayers. As mom got closer with help of Nurses guiding her to stand she peered down as close as she could get. Not able to pick her up because of the many many wires and tubes. She had wires on her little head, on her little tiny hand and wires to her belly button. Another wire attached to her little foot. Mom asked the nurse why? She was then told what had happened in a brief version and told what the different wires were and what they were doing. The wires in tummy are to feed her. Wires to her nose is Oxygen. Wire to her foot is where we took her blood and we are monitoring her. Nurse states "you can touch her mom, she knows your touch". Mom softly and quietly rubbed little Kearstyn hand and told her "Mommy's here baby", "You're going to be ok" with tears running down her face and having difficulty holding back the shaking in her voice. The nurses left mom alone with little Kearstyn for about 5 minutes maybe a little longer with mom standing next to her little bed and the bubble over her little body. Her little hands were clinched tightly and her eyes clothes, but with a peaceful sense on her little face. Nurses came back with a rocking chair and stated that we need to discuss with you on breast feeding and then the Nurologist is going to come by and speak with you. After time of instruction on breast feeding into bottles for the nurses to feed Kearstyn. The Nurologist came by and asked mom to come with him. Mom was told about the 3 strokes and shown the MRI / Xray, and told what she was seeing, the gray areas and what they were. Definition was told "Right Frontal Infart", nothing more than that was told, no expectation only that Kearstyn would need to stay in the hospital for undetermined amount of time right now. Mom remained in the hospital for 3 days, spending the majority of her time at bedside. Family and Friends were notified and the Prayers and Prayer Groups started. Mom comes from a very Faith driven family and knows the power of prayer. She began talking to the Lord and asking him for strength, wisdom, and guidance. Mom prayed over her little Kearstyn and dedicated her to him and asked for Angels of protection around her and her bed. Mom prayed for peace for herself and she prayed that the Lord would send help to her. Mom stayed by her bed and as the days went by little Kearstyn's condition slowly began to shows glimmers of improvement and hope. Mom was able to sit next to her bed in the rocking chair and the nurses would put little Kearstyn in her arms for mom to rock her and talk to her, while still attached to the many wires. Mom was able to start feeding her with a bottle and breast milk and little Kearstyn started fixing her eyes on Mommy. Mommy would sing to her, talk to her and tell her about all the wonderful things she would do in her life. Mommy would tell her how beautiful and smart she is. Mommy would tell her about all the family that can't wait to meet her. Kearstyn over the days would start gaining little bits of weight and would start smiling when she would see mommy for mommy's visits. Mommy stayed at her bedside and occassionally was only gone for a few hours at a time. Mommy would sleep in the rocking chair next to her bed and kept her finger touching Kearstyn's hand, every moment she was able to. Several more days went by and the Dr. came to talk with Mommy. He said "Keartstyn is having difficulty doing BM", we really need her to poop. She must stay here until we are certain she is able to go home with some ability to be away from the hospital. She was still on Oxygen, but according to the Dr.'s she could go home on Oxygen but the BM issue was a concern. Mommy, went back to bedside, and cuddling and bonding with Kearstyn would have conversation with Kearstyn. Kearstyn rocking in the chair and mommy telling her " ok Kearstyn, Mommy needs you to poop, it's really important that you do this, so you can get out of here and go home". Mommy prayed a long prayer asking the Lord to help and heal her little Kearstyn. The next day when Mommy came by for visit she was approached by Nurse with smile on her face, prior to mom getting to bedside. Nurse said , "We have good news today". "Kearstyn Pooped!!!" in quite a excited voice, her tone elevated enough for the other nurses attending the other babies to turn their heads and look and smile. The nurse stated, "The Dr. wants to meet with you and discuss expectations". Mommy was SO excited the tears just kept flowing and flowing and her face felt as though it was on fire from the salt of the tears. Wiping away the constant flow of tears and swollen eyes she could not stop from smiling and thanking God for this wonderful miracle. Mom went and spoke with Dr. Nurologist regarding what had happened and what was the next step. *****I'll be right back with more Shortly**** 9/11/2011 4:15pm
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