Northern Nevada Disability Resource Network

Just seemed like yesterday…

24 yrs ago my son was delivered at St Mary’s Hospital. The obstetrician assured me that the baby would be delivered without any problems. Yet without going into details our baby was presented breach and would be gently maneuvered with a firm massage on my tummy to turn the baby around. It was the most enduring event I ever experienced.  When that was not enough I endured even more discomfort…but I won’t go into details. Let’s just say my baby was delivered in a healthy environment with minimal challenges.

Josiah spent a few hours under bili lights due to a mild case of jaundice.  He was considered a colicky baby. However, I was focusing on a new journey into motherhood just three years after placing my first child for adoption.  I was in awe about what I was to endure for the next 18+ years of this child’s life.

Several months later, ‘milestones’ were introduced by Josiah’s pediatrician who discussed her concerns of potential developmental delays.  The doctor progressed the concerns with a referral to the Washoe County Department of Health Maternal Child Health.  We began weekly check-ins which included weight checks, diaper changes, and nutritional challenges due to feeding on a routine basis.  I followed the nurse’s instructions and kept a notebook of daily activities.

Josiah’s glasses

Josiah turns 6 months old his pediatric doctor refers us to an eye specialist because he was showing signs of strabismus. Dr. Johnson of Sierra Eye Associates examined Josiah’s delicate eyesight to recommend he may have more than one corrective surgeries over a period of time.  In the meantime, Dr. Johnson encouraged Josiah to ‘patch’ his glasses to increase eye muscles to focus to endure the ‘good eye’ to support the ‘bad eye’. As you can see from the photo, Josiah was not keen on keeping his glasses on!  No matter what we did to encourage including distractions, he would not accept the covering.

Thanks to the Lions Eye Foundation of Northern Nevada, Josiah was referred to undergo his second eye surgery. The first one was covered by a local specialist.  Lions Eye Foundation provided a one night at a hotel, one tank of gas, and a meal ticket near the hospital in San Francisco. The surgery was successful even though Josiah was experiencing discomfort from the anesthesia.  We returned home the next day to begin the recovery process. Luckily Josiah’s educational services accepted a ‘vacation’ until he was ready to return to normal routines.

Let’s fast forward to year 14.  Josiah’s father, myself, and Josiah met with a series of specialists who prepared a battery of tests. The comprehensive evaluation was recommended to ‘rule-out’ a specific organic disposition or better known as FAS (fetal alcohol syndrome). now keep in mind it’s not about the mother not being responsible while pregnant with her unborn baby. It’s about the lack of education she did not receive during the early stages of pregnancy.  So it was determined that Josiah did not have FAS, but potentially a genetic disorder that required a more in-depth evaluation.

The pediatrician ordered genetic testing.  Then referred to Dr. Robbin Palmer, a genetic counselor, to discuss the results and answer any questions we brought to the meeting.  Once the results were completed, Dr. Palmer met with Josiah and me to discuss the outcome of the testing.  I was in complete awe to know Josiah’s direct challenges were stemming from the results indicating a rare chromosomal abnormality. I began my research both on the internet and found several Facebook groups to join. I was relieved to know Josiah was not the only child who endured this rarity.  Maybe I was blessed to have a child with this de-novo indicator.  Neither his father nor I had the same abnormality. I was tested. Let’s just continue on.

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