was not prepared to watch his
development regress. His poor
little brain was too busy coping
with seizures to maintain the
milestones he had met. Seizure
watch and medication became
routine. After working up to a
heavy dose of Lamictal and
showing no change in epileptic
activity, Jonas’s neurologist
decided to try a different
medication. As we lowered the
dose of Lamictal and increased
the Tegretol, Jonas started
going downhill.
switched to formula. Battle two was
won. We both slept that night. We
broke every safe sleep rule in the
book, since Angels don’t sleep soundly
or as much as most people. I couldn’t
put Jonas in his crib without waking
him, so he slept in bed with me every
night. Once we started being function-
al at life again we began forming our
team…battle three. We went through
a couple of pediatricians, neurologists,
and therapists before finding the ones
we have and love.
Jonas was just over a year old when
he started running a fever, and had his
first grand mall seizure. He had anoth-
er at the doctor’s office and we were
sent immediately to Saint Francis.
Most Angels develop severe epilep-
sy around their first birthday, so we
were somewhat prepared. However, I
He was two years old when I
called his neurologist on New
Year’s Eve and told him to
book us a room at Saint Fran-
cis because I couldn’t keep him
alive at home. The seizures
were shutting down his bodily
functi ons. Every day the Tegre-
tol decreased in his system, he
made progress, but my son had
regressed to nearly
newborn develop-
ment for the second
time. Jonas was
switched to Keppra
for his daily medica-
tion. Months later it
became clear that
the new medication
wasn’t working.
That summer I took
Jonas out of state to
visit with neurologists
about a supplement
that ended up chang-
ing everything within
hours. Jonas was
more alert, happier,
and slept better!
About the time Jonas was able to
benefit from a school setting, the Little
Light House called to say they had an
opening. He has made SO MUCH
progress in the last two years! He has
weaned off bottles and is starting to
use feeding utensils on his own. During
meal times he pokes at his food with
a fork! Jonas started walking inde-
pendently this year, bringing tears of
joy to so many of our cheeks. Since be-
coming more confident in his walking,
he is showing more interest in other
skills. He is so social, and has started
to have more focus while working on
his fine motor skills in class. Jonas’
contageous smile is something that
the staff members of LLH can always
look forward to! We have both made
so many friends throughout all of this.
Jonas graduates this year, and I know
there will always be battles ahead of
us. The Little Light House will forever
be our army of hope, help, and love.
“The Little Light
House will forever
be our army of hope,
help, and love.”
THE BEACON | 5