• Sarah is 4 1/2 years. She will be 5 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 - still relies on scooting on her bootie and uses a walker primarly for school, but the walking has been her hugest accomplishment to date and is almost a full time walker. (yea!!!!)  

 

• Sarah's Abilities:
  • Can walk when she wants to
  • Has learned to use a few limited signs
  • Tries to speak, but on her terms
  • Works extremely well with providers
  • Rides a horse
  • Has started to show very loving affection
  • Tries to hide how smart she really is and can be
  • 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
  • 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

 

• 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