On November 11, 2012, I gave birth to my only child, Dominic Michael Aguilar. My pregnancy was a "picture perfect" nine months. The nightmare did not begin until Dominic was born unable to suck or swallow. After four days in the Neonatal Intensive Care Unit, doctors informed us they suspected he may have a neurological problem due to his lack of swallowing, low tone, and unusual muscular movements. We reluctantly agreed to have him sedated for an MRI, and discovered that his brain did not migrate and form correctly during the first three months in utero. Dominic was ultimately diagnosed with a very rare brain abnormality called Bilateral Perisylvian Polymicrogyria. His initial prognosis was that he most likely would be tube fed his entire life, would probably not pass a kindergarten grade level mentally, would not talk or walk, would be visually blind or visually impaired, would most likely develop a seizure disorder by four months of age, and would have an overall developmental delay with regards to his neurological, cognitive, visual and feeding development.
Dominic is now 19 months old, and has attended physical therapy, occupational therapy, infant stimulation therapy, and vision therapy five times a week both in-home and at Children's Hospital Orange County (CHOC) for the past year. During this time, he has been followed by several Neurologists, a Gastroenterologist, a Pulmonologist, an Ear Nose and Throat Specialist, a Geneticist, an Opthalmologist, and numerous therapists. To date, Dominic is tube fed, has severe acid reflux, has been hospitalized four times for aspiration pneumonia, is severely visually impaired, developed uncontrollable seizures at 8 months, is on oxygen at night, nebulizer treatments during the day, and is highly developmentally delayed. He is on five different types of medication which make him sedated for most of the day, does not have head or neck control, cannot sit or crawl, and has very little interaction with people and objects.
We have learned as a family to appreciate and cherish any and all of Dominic's accomplishments no matter how small. He continues to gain weight, has taken at the most five bites of baby food before choking and panicking, has slowly started to track lit objects, recognizes our voices, has started to communicate with cooing sounds, has explored his mouth with his right hand, and has developed the most beautiful smile we have ever seen. I have been blessed with incredible co-workers who have donated many hours of leave allowing me to experience these achievements and care for my son as his primary caregiver. Unfortunately, my leave is about to expire. Dominic requires 24/7 skilled care along with transportation to and from doctor and therapy visits in order to safely progress. We ask for any monetary donations to help lessen the burden on our family so I can return to work with a piece of mind knowing he is in good hands. Without skilled nursing care, I am unable to return to work.
He is our angel, however, our angel requires constant professional supervision, and therapy. Please keep him in your prayers as we pray for a better outcome than what is medically predicted for him.
We would like to thank all of our family, friends and co-workers who have supported us during this most difficult time. We appreciate and love you. The Aguilar Family
Surgery For Feeding Tube Placement in NICU at 2 Months Old
One of Many EEG's Conducted to Monitor Seizure Activity
EKG Conducted During a Hospitalization Due to Low Heart Rate
His First Smile at Nine Months Old
Sent Home on Oxygen Due to Several Pneumonias
Finially Baptized on October 12, 2013
Trying very hard to hold up his head.
Most recent EEG. 5/14. Trying to find the right medication to stop the seizures!