Sarah is  6 1/2 years. She will be 7 years old on June 10th.

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 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.

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

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 secondary to Neurofibromotisis

Left Hemiparesis - partially paralysed on left side of body.

Post Tramatic Stress Disorder

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

Extreme Sensory Issues

Extreme Chronic Constipation

Gastrointestinal Dysmotility

Sensoruneural Hearing Loss - Completely deaf in right ear

Left Peripheral Vision Loss

Cortical Visual Imparement with

Secondary 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

 

Sarah's Surgeries:

Functional Hemispherectomy at 8 months of age - Feb. 2004

VP Shunt at 8 months of age - Feb. 2004

Feeding button at 15 months of age - Sept. 2004

Ear tube placements at 4 years of age - March 2008

Rectal Biopsy - April 2008

 

Sarah's Disabilities are:

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 side

Left 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, but the walking has been her hugest accomplishment to date and is a full time walker. (yea!!!!)  

 

Sarah's Abilities:

Can walk

Has learned to use a few limited signs

Tries to speak, but on her terms

Works extremely well with providers

Rides a horse

Loves to swim

Has started to show 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.    

 

What Sarah LOVES

Going to L.I.F.E. (Lauren's Institute for Education)

Teletubbies videos

Baby Einstein videos

Walking and walking and walking

Swinging

Bouncing on the exercise ball

Spinning on her sit and spin

Riding "Ruby" the horse

Car rides

Airplanes flying in the sky

Currently love 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 Kisses

Loves to get the dog, Charlie mad and loves it when he barks like crazy

 

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

Wearing glasses

Not getting her way when she gets mad    

Going to the doctors

Going to new and unfamiliar places

Being in crowds

Being in loud place

Restaurants