We learned early on what the NICU doctors and nurses meant
when they described life in the NICU as a roller coaster and to treat our stay
like a marathon instead of a race. Boy,
were they right as Nathan contracted a bacterial infection that resulted in
Spinal Meningitis at only 7 days old. We feared the absolute worst as Nathan was touch and go for over 24
hours. That evening Nathan took a turn
for the worst and we didn’t know if he would even make it through the
night. It was so dire that we had him
baptized in the hospital. Maybe that
intervention was needed as Nathan slowly started to show signs of recovery from
the infection. The meningitis and the
medications that ultimately saved his life are the reasons for Nathan’s disabilities
today and the challenges that he will continue to face for the rest of his
life.
Nathan suffered severe brain damage as a result of the meningitis
and endured three brain surgeries in the first seven months of his life. He will live with a VP shunt in his head for
the rest of his life to relieve and manage the cerebral fluid that still
resides in his head. Nathan’s illness and
brain damage has impacted the nerves to his ears and eyes resulting in a severe
hearing loss and visual impairment. He
can now hear adequately with the benefit of hearing aids but
has numerous limitations. The most
severe limitation however is that Nathan has Cerebral Palsy – again a condition
resulting from the brain damage caused by the meningitis. Nathan's brain does not properly tell his muscles what to
do. He also deals with bowel
issues and acid reflux – he loves to vomit at a moment’s notice, often at very
inopportune times.
Nathan can not feed himself independently, has a very
limited vocabulary, and crawls for mobility when he gets stuck in his walker. He wears hearing aids and bilateral static orthotics during all waking hours. Nathan is gaining endurance in his walker, but still requires an adaptive stroller in the community when he fatigues and cannot walk any longer. He is not toilet trained and know that will be a milestone that will take 24/7 monitoring. We just don't know where to find that time right now!! Nathan also
has a sleep disorder – no regular pattern of sleep and often wakes several
times throughout the night for no reason and cannot settle back down.
He requires 100% assistance in almost every daily task and faces severe
developmental delays.
Nathan continues to work hard day in and day out to reach his potential. He's one of the strongest little boys we know to have endured so much and keep going (usually with a smile). We don't hold Nathan back and the sky is the limit as far as we are concerned. We work hard to make sure we give Nathan every opportunity available to continue to make progress.
"Work with me, not on me. Do with me, not for me." - Kathie Snow
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