Patience is a virtue, one that I admire greatly and also find myself
severely lacking. So for my first Mother's Day, God gave me the gift of
patience and the gift of healing. It is a Mother's Day I will never
forget.
We never saw another storm like the one that almost claimed her life. We
also knew with a surety that somehow or other, Everleigh would be
healed of her pains and burdens. We knew she was here to stay. But with
that said, April 2013 was among the toughest months of our lives. After a
24 hour break from neurological activity, Everleigh fell into a pattern
of 2-3 storms a day and 20 seizures a day. She was so miserable, and
our hearts broke for her every time she experienced a storm or seizure.
She was only sleeping about 3 hours a day, and Nate and I were sleeping
about an hour a day (and that was with taking turns). We pleaded every
day in prayer, sometimes in bitterness, frustration, and sometimes in
humility, for her suffering to end.
Our family was falling apart- Everleigh was clinging to life, our
marriage was really suffering, we were nearing financial destitution,
and Nate and I as individuals had sacrificed everything to care for her.
Nate withdrew from school so he could stay home to
support Everleigh through her suffering. She needed her Mommy and Daddy all the time. I forfeited my only chance to return
to figure skating. We both would go days without showering or eating
more than a bowl of cereal. We stopped going on dates. We liquidated our
emergency savings and Nate's retirement fund to pay for thousands of
dollars in medical bills and to support ourselves while Nate was on
break from school and work. Our lives stopped for those few months, and
we hoped, and pleaded, and prayed together that things would get better.
The week of Mother's Day, we finally reached our breaking point.
Everleigh had started to have seizure clusters of 6 seizures in 10
minutes, bringing her count to 40 seizures a day in addition to the 2-3
storms she was experiencing every day. We couldn't do it anymore. It was time to go back to the
hospital and see if anything could be done. Our attending pediatric team
was shocked by Everleigh's condition, both by how severe her deterioration
was and that she had somehow clung to life for so long. They
recommended immediately placing her in a medically induced coma. This
was not a plan we wanted to follow. But thankfully, when we arrived, Evey's sweet neurologist, Dr. O, was ready. She came into our room and presented a
bold plan and simply stated that she was not ready to give up yet. She
proposed a series of tests and radical changes to Everleigh's treatment.
The tests revealed that Everleigh had a rare strain of UTI that would
require immediate treatment and could account for some of the increase
in seizure activity. The tests also revealed that Everleigh was
suffering from malnutrition, bone deterioration, and severe bowel
irritation as a result of the ketogenic diet. So, in a matter of 24
hours, Everleigh was taken off the ketogenic diet and put back on normal
formula, taken off 4 of her 6 seizure medications, and given a thorough
antibiotic treatment. We prayed and waited with nervous anticipation to
see how Everleigh would react. Our wonderful Palliative Care Support
group came with words of encouragement and love as we waited. Thank
goodness for their love and strength! We just didn't have any left.
.JPG) |
| We will never give up, baby girl, never! |
And then it happened. It was the night of Mother's Day. Everleigh slept
through the night. Then 24 hours went by without a single seizure or
storm. A great easiness settled into her countenance-the swelling in her
body subsided, her breathing returned to normal, her heart rate resumed
a normal pace-she was no longer in pain. She was resting, really
resting! Our miracle had come again! With tears in our eyes we
celebrated what we had scarcely hoped could be possible-complete relief
from 2 months in neurological hell. What a precious gift for Mother's Day!! I had my baby back.
.JPG) |
| 2 weeks post hospitalization; Evey got her first taste of an orange creamy and loved it! It was her first bite of food in over 2 months |
|
We were discharged and returned to visit Evey's neurologist a week
later, who proposed one more change-adding an archaic seizure medication
that, though risky, might just preserve Everleigh's incredible
progress. Ladies and gentlemen, that woman is a determined genius. She saved our baby's life. We
contacted her later in the summer to let her know that Everleigh had not
had a single seizure or storm since we started the new medication.
Everleigh was back to living the life no one had expected was possible
for her. She was a living miracle and medical anomaly. We couldn't
be more grateful! Her neurologist was overjoyed as well!
Its been 8 months since then. To this day, Everleigh has not had another
storm and has had only a handful of seizures. I have found great consolation in the idea that even though this wasn't very long ago, sweet Everleigh does not seem to have any memory of this time in her life. But Nate and I will always vividly remember these times. Does she still have
health issues? Definitely. Her battle isn't over. While Everleigh is enjoying great seizure control, her epilepsy is still alive and well, and the possibility of this happening again is ever present. Everleigh also has to
struggle with muscle tightness and weakness, severe developmental
delay, chronic lung disease, and the constant battle with acute
illnesses. But she spends the vast majority of her days with great joy
and without pain. She is back to making progress and continues to have an infinite enthusiasm and curiosity about life. Everleigh is a living
testimony of the infinite goodness and miraculous power of our Heavenly
Father, and her journey has forever changed us for the better. We love
her so much.
Thanks again for reading and hanging in there with us!
