Sarahs Page

This page is dedicated to Sarah and her long history with her disabilities.

                                                      

       

 

Sarah has a daddy and mommy that love her so very much and would literally go to the ends of the earth for her. Sarah has such a sweet, funny, beautiful, awesome and wonderful twin sister Hannah who helps out a lot and loves her sister so very much.Sarah has quite a few grandparents and cousins and extended family, friends, caregivers, providers and doctors that love her and want the very best for her.Sarah also has many people outside the family that think she is just so wonderful and beautiful too. My precious girl has shown all of us what the real meaning of strength, determination and really giving all that you can means. She is MY HERO!

Sarah has the following diagnoses:

Cerebral Palsy (CP) -  an umbrella term encompassing a group of non-progressive, non-contagious conditions that cause physical disability in human development. "Cerebral" refers to the cerebrum which is the affected area of the brain (although the disorder most likely involves connections between the cortexand other parts of the brain such as the cerebellum), and "palsy" refers to disorder of movement. CP is caused by damage to the motor control centers of the young developing brain and can occur during pregnancy (about 75 percent), during childbirth (about 5 percent) or after birth (about 15 percent) up to about age three.    

  Epilepsy  - is a common chronic neurologic disorder characterized by recurrent unprovoked seizures. These seizures are transient signs and/or symptoms of abnormal, excessive or synchronous neuronal activity in the brain.

Cortical dysplasia - a congenital abnormality where the neurons in an area of the brain failed to migrate in the proper formation in utero. Occasionally neurons will develop that are larger than normal in certain areas. This causes the signals sent through the neurons in these areas to misfire, which sends an incorrect signal. It is commonly found near the cerebral cortex and is associated with seizures and may be associated with some level of developmental delays.  

Autism - Autism is a developmental disorder that appears in the first 3 years of life, and affects the brain's normal development of social and communication skills. People who have autism often have delayed language development. They usually have trouble with social interactions. Another characteristic of autism is what some people describe as "sensory overload": Sounds seem louder, lights brighter, or smells stronger.

 Neurofibromotisis (NF1) -  is a condition that causes tumors to grow on nerve tissue, producing skin and bone abnormalities.NF is often diagnosed in childhood, occasionally in infancy (in children with severe cases), but usually around 3-16 years of age. Effects of the disease vary widely — some children live almost unaffected by the condition; rarely, others might be severely disabled. There's no specific cure for NF, but tumors usually can be removed and related complications treated. Because learning disabilities occur in about half the children with NF, some might need extra help in the classroom. 

Left Hemiparesis - partially paralysed on left side of body.

Post Tramatic Stress Disorder - is a severe anxiety disorder  that can develop after exposure to any event that results in  psychological trauma.  This event may involve the threat of death to oneself or to someone else, or to one's own or someone else's hysical, sexual, or psychological integrity  overwhelming the individual's ability to cope.  As an effect of psychological trauma,  PTSD is less frequent and more enduring than the more commonly seen acute stress responce. 

Apraxia -  a neurological disorder characterized by loss of the ability to execute or carry out skilled movements and gestures, despite having the desire and the physical ability to perform them. Apraxia results from dysfunction of the cerebral hemispheres of the brain, especially the parietal lobe, and can arise from many diseases or damage to the brain

Sensory Processing -  is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses.

Sensory Intergration Disorder - is a condition that exists when sensory signals don't get organized into appropriate responses.

Extreme Chronic Constipation/ Gastrointestinal Dysmotility - is the decreased ability of the intestines to push food through, and often causes dilation of various parts of the bowel. It can be a primary condition (idiopathic or inherited from a parent) or caused by another disease (secondary). The clinical and radiological findings are often similar to true intestinal obstruction.

Sensoruneural Hearing Loss - Completely deaf in right ear.

Left Peripheral Vision Loss - results in tunnel vision.

Tunnel vision is the loss of peripheral vision with retention of central vision, resulting in a constricted circular tunnel-like field of vision.

Cortical Visual Impairment - bilaterally diminished visual acuity caused by damage to the occipital lobes and or to the geniculostriate visual pathway.
with secondry diagnoses of :

Esotripia - (is a form of strabismus, or "squint", in which one or both eyes turns inward.

Nystagmus  - a congenital or acquired persistent, rapid, involuntary, and oscillatory movement of the eyeball, usually from side to side.Left Eye Amblyopia - or Lazy Eye.

Anhidrosis - is the inability to sweat in response to heat. People with anhidrosis have a dangerous inability to tolerate heat. In situations where the weather is dry and hot, the inability to sweat can be life threatening. Anhidrosis can be life threatening because the body will overheat. If the lack of sweating is localized, it is usually not as dangerous. Sarah's Surgeries:

Functional Hemispherectomy - is a procedure in which portions of one hemisphere which is used the least are removed, and the corpus callosum is cut. This disconnects communication between the two hemispheres, preventing the spread of seizures to the functional side of the brain. (at 8 months of age - Feb. 2004)

VP Shunt - Ventriculoperitoneal shunting is surgery to relieve increased pressure inside the skull due to excess cerebrospinal fluid (CSF) on the brain (hydrocephalus)    
(at 8 months of age after brain surgery - Feb. 2004)

 Gastrostomy - is an operation performed to create an opening into the stomach for the purpose of administering food, fluids and medications. The Mic-Key® feeding button is a device inserted by which the feedings, fluids andmedications are administered.
(Feeding button/G-Tube at 15 months of age - Sept. 2004)

Ear tube placements - 4 years of age - March 2008.

Rectal Biopsy - is a procedure to remove a small piece of rectal tissue for examination.
4 years of age - April 2008. This was done to test for Hirshsprungs. 

 Sarah's Disabilities are:

Non Verbal - Unable to talk, Unable and Refuses to drink or eat anything by mouth. She is strictly fed by a g-tube in her tummy.Extremely high sensory issues. A lot of high anxiety and mistrust issues. Partially paralyzed on left sideLeft arm extremely weak. Cognitive Delay. Could not walk till she was 4 years old. Started walking in October of 2007. She relied on scooting on her bootie and used a walker primarly for school. 

Sarah's Abilities: Can walk, walks very well, but still needs alot ot therapy. Has learned to use a few limited signs. Tries to speak, but on her terms - will say "Momma" "Yea-Yea" "Ga-Ga" for good girl and Dada, "All done", "Go",  and "Up". Works extremely well with providers and has socially getting better with people. Rides a horse Loves to swim. Has started to show lots of very loving affection. Tries to hide how smart she really is and can be. Loves to tease, pull your hair, your ear, jamm her knuckles into your toes.  Loves affection and loves to laugh.  She is sooo happy!!! 

She understands ALOT, alot more than we give her credit for. We all  know she is EXTREMELY smart. She is VERY sweet and VERY funny. She is EXTREMELY strong physically. She is EXTREMELY stubborn. We know that is what has gotten her through all the tough times she has had.  

Sarah LOVES going to school. She is currently at Highland Park in the SCILLS program where language and life skills are taught. They are getting her to use an augcom device as her "voice". So far she is progressing so much in the little time she has been there. She is bussed to and from home. 

Music ....Justin Bieber... especially the "Baby" song. Walking.... walking....walking. Teletubbies videos, Baby Einstein videos. Walking and walking and walking and walking. Swimming, swinging, bouncing on the exercise ball, spinning on her sit and spin, car rides, airplanes flying in the sky, loves the Jack in the Box toy, balloons that are let go, toys with buttons that are cause and effect, spin globes she LOVES, bubbles, spinning in our office chair, hugs and isses especially tickles. 

Loves to get our dog Charlie mad and loves it when he barks like crazy. Just recently..... dancing .... oh and OPERA MUSIC.

What Sarah DOES NOT LIKE:Stimulation on her face,Stimulation on her lips.
Brushing her hair at times, Brushing her teeth every time, Stimulation on her arms, back and legs.
To work her left arm as in bearing weight and exercises, Not getting her way when she gets mad    Going to the doctorsGoing to new and unfamiliar places, Being in crowds, Being in loud place and loud restaurants.