Gage is an easy going 5 year old boy that loves his monster trucks, fire trucks and the St. Louis Cardinals. If he’s not crashing the monster trucks, he is pretending to be Mr. Yadi (Yadier Molina) hitting a home run. He is the second child in our family. He has an older brother of 8 years and a 6 month old baby brother. He looks up to his big brother and is sweet with kisses with his baby brother.
Gage was born on February 6, 2007 in the New Orleans metro area and appeared to be healthy with no medical problems. Shortly after arriving home, we noticed that he was having problems with swallowing and would gag with each feeding. Our concerns were expressed multiple times for several months with his pediatrician, but were told that he was just a bit behind and it was not of concern. At 5 months of age, other concerns were raised with the primary issue being Gage’s vision. He was not looking directly at anyone or any objects. He also was not reaching for toys. At 6 months of age, his pediatrician referred us to an ophthalmologist. During the exam, Gage was not tracking and appeared to not see much beyond some light. The ophthalmologist explained that his physical eye did not show any signs to indicate vision problems. Due to the eye appearing normal, he ordered an MRI to see if there were any problems with optic nerves. From this MRI, we learned of the multiple brain abnormalities. His MRI was reviewed by several neurologists in the area and they were unable to decipher what they were seeing. We were told that the abnormalities may be cysts, band heterotopia, tuberous sclerosis and others; many of which we can’t remember. In August 2008, when Gage was 18 months old, we traveled to Texas Children’s Hospital to see Dr. Gary Clark. Gage had his second MRI and upon review, Dr. Clark concluded that Gage has bilateral PMG on his frontal and temporal lobes. Just 2 months after getting the diagnosis, Gage started having seizures. With concerns of his seizures and changes in Gage’s vision, another MRI was taken in May of 2009. Dr. Clark also concluded from his MRIs that Gage has several “complex brain malformations” along with PMG. Some include a cleft of the brain stem, dysmorphic ventricular system, acrachniod cysts, agenesis of the corpus collosum, an abnormal thalamus and basal ganglia, and other forms of cortical dysplasia.
After the appointment, Dr. Clark referred us to Dr. Jane Edmond, a neuro-ophthamologist. Upon examination, she concluded that Gage has cortical vision impairment, ocular motor apraxia (OMA), and amblyopia (caused from strabismus). Since this visit he has had 2 eye surgeries to help correct the strabismus. Currently, his vision has come a long way in the past few years. He was once thought to not see much more than light and possible outlines of objects. Today, he wears glasses for far sightedness and is able to see adequately. He has some struggles with depth perception, tracking objects due to OMA, has a few “blind spots”, but he is able to look people in the face and smile. That is a great gift!
Throughout the years, Gage has made tremendous progress and is doing more at age 5 than we were initially told to expect for him to accomplish by adulthood. He started sitting without assistance at 11 months, getting into sitting position at 14 months and crawling around 20 months. He started taking his first steps at 27 months while wearing DAFOs and by 2 ½ years, he was able to walk on his own without the use of a gait trainer. He has been in traditional therapies since 7 months of age. They include physical, occupational, speech/ language and vision therapy. He is currently attending a half-day early intervention preschool that provides special education instruction. He was recently diagnosed with Executive Functioning Disorder and ADHD and they are working on new methods of teaching him in the classroom. Last year, he began his favorite therapy that gets him excited. Equine Assisted Therapy! (www.equine-assistedtherapy.org) He absolutely loves riding the horses and always reminds us that we need to stop to get Gumball and Dewey (his favorite horses) some carrots.
The last 5 years has been an adventure. There have been lots of ups and downs, but in the end, Gage is making such outstanding progress that he amazes us everyday. Firstly, through the grace of God and secondly through lots of therapy with some great therapists, Gage is where he is today. There is still plenty of work ahead of us, but as Dory told Nemo, “just keep swimming”.
Written by Gage’s mother, Katie Brown