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| By: Krista |
Devin was officially diagnosed with SOD/ONH when he was almost two years old. Devin was born on December 8, 1997. He was actually supposed to be a Christmas baby, but my labour was induced at 38 weeks of pregnancy (or at least that it was we thought, it was determined after birth that I was probably only 35 or 36 weeks pregnant). My pregnancy was induced because it was determined through fetal monitoring that Devin had some sort of heart problem. Unfortunately the doctors were unsure at the time what was wrong. After birth it was discovered that Devin had two very large holes in his heart, an ASD - Atrial Septal Defect and a VSD - Ventricular Septal Defect, both were repaired surgically when he was three months old.
Since that time our lives have changed drastically. As time went on Devin was diagnosed with many other problems, starting with a moderate bilateral hearing impairment (diagnosed in April 1998). He wears two behind the ear, digital hearing aids. He seems to hear quite well when he is aided, although we have not been able to get an accurate hearing test done, he just doesn't like to cooperate with the Audiologist.
Devin was born with the "classic" shaky eyes, otherwise known as nystagmus. At first everyone thought his shaky eyes were caused by his extreme weakness due to his heart condition. I am the first to admit that his eyes did seem to get somewhat better after the heart surgery was performed, but never really went away. In September of 1998 I requested his Paediatrician refer him to an Ophthalmologist because I felt his vision was impaired to some degree. We seen our first Ophthalmologist in October 1998 and boy was I shocked when I was told that my son had virtually no vision. This Ophthalmologist referred Devin to a Paediatric Ophthalmologist whom we seen in February 1999. The outlook for Devin's visual future seemed a little brighter after this appointment. The Paediatric Ophthalmologist informed us that Devin had bilateral ONH, but stated that he should have fairly good functional vision by the time he is five years old. Devin's vision has improved greatly since that time (went from 20/700 to 20/360 in a eight month time period).
Devin had very low muscle tone (hypotonia) at birth and to date he is not able to sit independently, crawl or walk. He learned to roll over this year and can now roll all over the place. We work daily with Devin to help strengthen his muscles.
One of our biggest challenges at this time is Gastroesophageal Reflux Disease. Devin vomits many times a day. We are presently trying to control this with medicines, but so far they are not working very good. We are currently awaiting word from his GI Specialist to see what the next plan of action is.
Currently the only hormone replacement that Devin has had to have is testosterone to make his small penis grow (it really works). Devin is monitored on a regular basis for Cortisol Deficiency, Growth Hormone Deficiency, Hypothyroidism, etc.
Devin is seen regularly by a whole list of doctors and other professionals. The list includes a Paediatrician, Paediatric Ophthalmologist, Paediatric Endocrinologist, Neurologist, Urologist, Cardiologist, GI Specialist, Orthopaedic Surgeon, Physio Therapist, Occupational Therapist, Speech/Language Pathologist, Paediatric Feeding Team, Teacher for Visually Impaired Children, Teacher for Deaf/Hard of Hearing Children and an Early Interventionist.
Boy are we busy, but I will do everything in my power to ensure that Devin leads the healthiest, happiest life possible. He is such a sweet little boy with the cutest smile and the most contagious giggles.
Devin Paul 1 month,
January '98.
Devin (really upset)
with his Dad on Father's day. Devin is 6 months in this picture.
Jennifer cutting Devin's
hair at age 2.
Devin and Jennifer
his big sister!! Devin is 2 years old here.
Devin 2 years with
his sisters Ashley and Brittany, Christmas '99.
