Sophia vs Microcephaly

Sophia was diagnosed with Microcephaly at birth (circumference of the head is smaller than normal because the brain has not developed properly or has stopped growing).  She has many other diagnosis due to this condition.  She has Global Developmental Delay, Sensory Integration Disorder, Cognitive Impairment, Expressive Speech Deficit, Obstructive Sleep Apnea, Persistent Insomnia, Hyperkinesis of Childhood with Developmental Delay, Sleep Disturbance and Periodic Limb Movement Disorder. 

Sophia had tubes put in her ears after 13+ consecutive ear infections. Her tubes stayed put for a few years. When the tubes came out they left perforations that have not healed on their own. She had surgery in 2014 to place patches over the wholes. The patches did not take and she is having another surgery on September 16, 2015 to repair the perforations with a different approach.
She has had her tonsils & adenoids removed due to Obstructive Sleep Apnea. This did not take care of the apnea and now has a cpap machine she uses at night.

She sees about 10 specialist on a routine basis. She goes to speech therapy and occupational therapy twice a month (4 total a month between both). The OT and Speech Therapist actually recommend her coming once a week for each, but we limit it to two to help spread out visits and make it last longer. Sophia just recently had a Physical Therapy Evaluation and has a weak trunk, pronation in her ankles and high tone in her legs. The therapist also has recommended her to have PT once a week. (That would put her at 3 therapy visits a week, all on 3 different days due to insurance not allowing her to do more than one discipline a day)

She is considered disabled, but medical coverage is not sufficient for her needs. We purchase Blue Cross Blue Shield to help with therapy and other medical visits (Insurance premium is $2,400 a year). They only cover 30 therapy visits a year. If we did each discipline once a week like recommended by therapist, it would only give her 2.5 months of therapy. That leaves us to pay out of pocket for 126 visits at $75 each, plus 86 mile round trip.  All of her other doctors (except pediatrician) are 130-140 miles round trip.

Sophia is a very cheerful 5 year old girl, mentally she is at a 2 and a half year old status. My wife and I do not have any health Insurance due to paying for all of her needs. Sophia also has a 2 year old brother. My wife doesn’t have a job because Sophia has a lot of appointments and with her disabilities we simply don’t trust many people to take care of her. Sophia can sign more words than she can say. We have made the decision to Homeschool her for many different reasons (her not being able to communicate very well, she will get more one on one, and due to the lack of push the public around us has for Special Needs, etc..) One of Our biggest fears is she can't tell us if something happened to her or someone did something to her.  

All donations will go to help pay for Therapy, medical bills not covered by insurance, special sensory materials and fuel for visits.

Any help is very appreciative.  If you need more info just ask, I am sure there is a lot that has been left out.