A10
OFF PAGE ONE
East Oregonian
Saturday, June 18, 2022
Seizure:
She gets frustrated with that,
too. We can see her getting
frustrated with us.”
“The St. Anthony’s ther-
apy team has been amazing,
and we appreciate all they are
doing for her,” Deona said.
“She is making progress.”
Continued from Page A1
Survival and diagnosis
She said medical person-
nel at the Heppner hospi-
tal struggled to intubate the
thrashing baby girl. Deona
rode along on the medical
transport plane to Doern-
becher Children’s Hospital
in Portland, while Todd and
Lindsey drove there in Todd’s
personal pickup. Inside the
airplane, the crew worked to
keep the baby alive.
“When we arrived at the
pediatric intensive care unit
at Doernbecher Hospital in
Portland, Oaks was in bad
shape, barely hanging on,”
Deona said. “She was dehy-
drated, she wasn’t getting
enough oxygen, and her little
body was becoming hypo-
thermic on top of everything
else.”
As medical personnel
at the hospital worked to
stabilize the baby, she went
into cardiac arrest. Code
blue. CPR revived Oakleigh
but her condition remained
unstable. Lindsey signed
permission to connect the
baby to a machine that
pumped blood outside the
body to remove carbon diox-
ide and bring back oxygen-
rich blood. Though Oakleigh
rallied, an MRI showed she
had suffered a stroke during
the procedure.
The family made it home
for Christmas that year, but
they were shaken. The little
girl continued to experience
periodic seizures and her
neurologist eventually diag-
nosed the baby with Dravet
syndrome, a seizure disor-
der that generally begins in
the first year in otherwise
healthy infants and affects an
estimated 1 in 15,700 individ-
uals. It was a difficult diagno-
sis. June is Dravet Awareness
Month, a time when those
affected by the syndrome
reach out and try to describe
their world.
Life can be nerve-wrack-
ing. A rescue plan hanging on
In it together for
Oakleigh
Kathy Aney/East Oregonian
Umatilla County sheriff’s deputy Todd Siex set his granddaughter Oakleigh down June 11, 2022, after holding her for a min-
ute. Oakleigh, who has Dravet syndrome, is in constant motion.
the family’s refrigerator lists
five chronological things to
do until Oakleigh stops seiz-
ing. The plan is signed by
her pediatric neurologist at
Oregon Health & Science
University.
“ To whom it may
concern,” the letter starts.
The list starts with
instructions to give a nasal
medication and call 911 if a
seizure begins. If that doesn’t
work, the emergency medi-
cal technicians have several
more strategies to try. Timing
is critical.
Revolving life around
Dravet syndrome
More than two years since
that first attack, the family
has become Team Oakleigh.
Last year, the trio moved
from their beloved Lexing-
ton to Pendleton, where St.
Anthony Hospital is better
equipped and has quicker
access to Life Flight and
Oakleigh already had a pedi-
atrician and therapist.
They adjusted profession-
Kathy Aney/East Oregonian
Oakleigh Hodges snuggles with her kitten on June 11, 2022,
in the backyard of her family’s Pendleton home. Oakleigh,
who has Dravet syndrome, seemed to be a normal, healthy
infant until her first seizure at 11 months.
ally as well. Todd secured
a job as a deputy with the
Umatilla County Sheriff’s
Office. Deona commutes
to her job with the Morrow
County District Attorney’s
Office in Heppner. Lindsey
gave up her job in order to
stay with Oakleigh.
Recently, the three relaxed
in their new Pendleton living
room and reflected. On the
carpet, Oakleigh drew with
giant Crayons. She giggled as
she stuck a sticker on Todd’s
cheek and he flashed her a
silly smile. Then she picked
up her pink, sparkly iPad and
listened to “The Boom Boom
Song” for a while. Out in the
yard, she chased bubbles and
cuddled with her cat.
Life with Oakleigh offers
a huge dose of joy, they say,
along with so much worry.
The little girl, spunky,
fearless and outgoing, loves
to color, swim, be around
animals and spend time
outside, running and squeal-
ing. She knows her shapes,
alphabet, colors and animals,
though she struggles with
balance and speaking clearly.
Every seizure knocks her
back developmentally, and
she must slowly make her
way forward again.
“Her speech is probably
behind her comprehension,”
Todd said. “You can see her
counting, recognizing letters.
Telling you what she’s think-
ing, she struggles with that.
The onset of a seizure —
which hasn’t happened since
February — means all hands
on deck and sometimes an
ambulance ride, such as the
one during a visit to Portland
last November.
“That was the craziest
ride,” Lindsay said. “When
we turned the corner, every-
thing slid.”
The three adults form
a phalanx of sorts around
Oakleigh, knowing they must
be vigilant. No more camping
trips in the mountains. Even
driving to the Tri-Cities takes
planning.
“The morbidity risk of
kids with Dravet syndrome is
very high,” Todd said. “If you
don’t act and you don’t how to
respond to it, her chance of
dying is very high.”
Lindsey said she worries
she can’t adequately convey
how quickly one must act
when Oakleigh has a seizure.
She’s considering enrolling
Oakleigh in preschool but
conversations with providers
leave her unsure. She wants
to attend school with her
daughter in case of a seizure,
but hasn’t received encour-
agement so far.
“They say, this is your
time to have a couple of hours
to yourself,” Lindsey said.
“They think we’re being
dramatic,” Todd said.
The three adults know
people just don’t understand
the complexities of the disor-
der. Why would they? Until
that day three years ago,
when the call came crackling
across Todd’s police radio,
they didn’t either.
So they focus on Oakleigh
and revel in her take-no-pris-
oners attitude about life.
“Oakleigh is truly our
little miracle,” Deona said.
“She is such a fighter.”
Hotel:
Continued from Page A1
East Oregonian, File
Industrial facilities operate Jan. 11, 2022, at the Port of Mor-
row near Boardman. Oregon Department of Environmental
Quality announced Friday, June 17, it increased the penalty
against the port for nitrate pollution from $1.3 million to a
little more than $2.1 million.
Fine:
Continued from Page A1
“The amended notice cites
the port for additional occur-
rences of applying wastewater
containing nitrogen to fields
that already had too much
existing nitrate or moisture
in the soil,” according to the
statement. “Having too much
nitrate or moisture in the soil
when applying wastewater
increases the likelihood of
nitrates flowing down into
the groundwater rather than
remaining in the soil for crops
to use.”
DEQ also reported the port
documented additional viola-
tions to DEQ in its annual
report and in email and phone
reports of noncompliance. The
additional violations occurred
between November 2020 to
February 2021 and November
2021 to February 2022.
The revised fine totals
$2,100,351.
DEQ in its amended notice
stated it “acknowledges that
the port is committed to find-
ing a long-term solution to the
management of its wastewa-
ter that both promotes benefi-
cial reuse and is protective of
public health and the environ-
ment.”
Even so, according to the
notice, since DEQ issued the
notice, the Port of Morrow has
not submitted a plan to achieve
compliance with the nitrogen
loading limits in the permit.
The new notice requires the
port to “develop and imple-
ment an approval plan to
achieve compliance with
both the nitrogen loading and
moisture content limits in the
permit.”
Because the port already
has an appeal going with the
initial fine, the DEQ explained
it does not need to submit a
new appeal, although it can
submit an amended request
for a hearing.
The state environmental
department also encouraged
the port to collaborate with
local partners to complete a
“Supplemental Environmental
Project” that addresses high
nitrate concentrations in the
drinking water in the ground-
water management area. DEQ
stated the port could resolve
as much as 80% of the penalty
through such a project.
Oregon Rural Action, an
Eastern Oregon community
organizing and advocacy
organization, in a press release
before the DEQ announced
the larger penalty issued a
notice that Morrow County
Commissioner Jim Doherty
was meeting Friday at 6 p.m.
with Boardman residents in
the West Glen neighborhood
where most of the 60 wells
tested had above the maxi-
mum contamination levels
for nitrates, with dozens up
to five times the level. Kristin
Ostrom, executive director of
Oregon Rural Action, said the
DEQ penalties emphasize that
people in the Boardman area
have been in harm’s way for a
long time.
She said it was past time to
get residents immediate help,
emergency water, crucial
information and conduct water
testing to ensure access to safe
drinking water.
As of June 14, 25 rooms
were ready to go with the
other 15 rooms nearing
completion. Barnett said
they hope to have all 40
rooms — two suites, six
doubles and 32 kings —
done by next week. With
a fully finished pool and
sauna outside, a construc-
tion process that began in
December 2021 is nearing
completion.
It was a process the
owners were unsure would
ever happen. In fact, the
group originally had a
different town in mind.
“We only stopped in
Pendleton on our way to
see a hotel in Baker City,”
Mogg said, “Then we saw
this hotel and knew that’s
what we wanted. We got
really excited. After going
over the numbers, we didn’t
even end up going to Baker
City.”
The three were drawn
into the atmosphere of
Pendleton, and talked things
over with Economic Devel-
opment Director Steve
Chrisman. When the lodge
secured a $500,000 grant
and a $100,000 Jump Start
loan from the Pendleton
Development Commission,
it cleared another hurdle to
get things moving. The deal
requires Cascadia Hospital-
ity to pay back the loan in
three years with a 3% inter-
est rate.
Now, the owners want
the hotel to serve as a way
for tourists to experience the
same thing they did those
years ago.
“We really want to bring
a new type of traveler to
Pendleton,” Duncan said.
“Our motto is ‘embrace the
journey.’”
Chrisman agreed, noting
the untapped potential of
Pendleton outside of the
town’s premiere event, the
Round-Up.
“The hotel will drive in
adventure bikers and other
travelers from all over to
see Pendleton,” Chrisman
said. “This place has gone
Yasser Marte/East Oregonian
MotoLodge owners David Mogg, left, and Jeremy Duncan discuss the grand opening of
their Pendleton hotel Thursday, June 16, 2022. “We didn’t find Pendleton,” Duncan re-
marked. “Pendleton found us.”
Yasser Marte/East Oregonian
Guests could check out rooms Thursday, June 16, 2022,
at the grand opening of the Motolodge in Pendleton. The
hotel has 25 rooms ready to go with the other 15 rooms
nearing completion.
Yasser Marte/East Oregonian
A small wooden sauna stands poolside Thursday, June 16,
2022, at the opening of the MotoLodge in Pendleton.
from a section of town that
didn’t perform to a new
place that will generate a
lot of revenue.”
And the revenue already
has started. Despite not
being open to the public,
the MotoLodge is booked
solid for next week. With
the Jackalope Jamboree
coming to town June 23-25,
many visitors turned to the
hotel as a place to stay.
Even with the success,
there’s still a bit of work to
do. Shipping delays leave
the hotel without bed frames
and desks. But those small
missing pieces do little to
sour the excitement for the
rehabbed establishment.
The hotel is looking to
rent out the pool and sauna
area for parties, and plans on
selling passes to come to the
pool as well. Even before they
open their doors, Duncan and
the rest of the lodge owners
have become intertwined in
the community.
“A big reason that I’m
excited for the whole proj-
ect is because I love the
owners’ energy,” Chrisman
said, “it’s infectious to me
and to the community. It’ll
bring people in.”
For the group that was
not even considering Pend-
leton when they started their
hotel journey, they could not
agree more with Chrisman.
“It’s not like we found
Pendleton,” Duncan said,
“Pendleton found us.”
Hotels development is
having a moment in Pend-
leton. The new Radisson
Hotel next to the Eastern
Oregon Regional Airport is
nearing completion.