Dear Family & Friends,
Merry Christmas and Happy New Year from the Marshall family! We are
once again praising God that we are wrapping up another wonderful year with
Ethan. Two thousand and thirteen has been a year filled with many changes,
challenges, and celebrations.
Last winter Ethan mastered
cruising along the furniture and became a super speedy crawler who enjoyed
pushing his toys from one room to another. He even began taking steps with his
walker! We also reveled in the improvement of Ethan’s sleeping habits! Ethan
received more powerful hearing aids to provide him with additional
amplification and they appeared to make a great difference in Ethan’s ability
to hear the world around him. Unfortunately, in the midst of the happiness,
Ethan seemed to be continually battling illness and dehydration which led to
many doctor appointments and the introduction of a GI doctor to our team.
On the first day of spring we
found ourselves on the way to Carle hospital. Ethan was admitted for IV fluids
and ultimately had surgery for the placement of a feeding tube. While we
delayed a feeding tube as long as we could we agreed with the doctors that it
was time. Without this type of intervention we were not going to be able keep
Ethan alive and healthy. Although Ethan initially had some difficulties healing
from the initial surgeries which also led to some temporary setbacks in his
gross motor skills, we can now say without a doubt that it was the right thing
to do. We have a reliable way to provide Ethan all of his nutritional and fluid
needs and we have seen his overall health improve since the surgery.
We held our 2nd
Annual Pancakes for PBD-ZSD in May. We were so blessed by all those who volunteered
and attended the breakfast. With your
help we raised enough to cover our travel and lodging expenses for the GFPD
Conference and what we didn’t need went to help other families impacted by
PBD-ZSD attend as well. Thank you so much for your support and generosity.
There will not be another GFPD conference until 2015 so the proceeds from next
year’s Pancakes for PBD-ZSD event will be designated to PBD-ZSD research.
The great weather this spring
and summer allowed Pamela and Ethan to spend time outside, which usually meant
that Ethan rode along in the jogging stroller while his mommy did all the hard
work. Many evenings after Jeff got home from work the whole family enjoyed a
relaxing family walk. We always miss this when it gets cold outside.
On July 1st we were
thrown another curve ball – Ethan had what appeared to be a seizure at STEPS
(his pre-preschool program). The teachers called Pamela and she went to pick up
Ethan and Jeff met them at the hospital. After several hours and numerous tests
Ethan was transferred to Carle for additional testing and observation. Ethan’s
EEG was VERY abnormal and indicated extensive seizure activity so the
neurologist started Ethan on an anti-seizure medicine. Ethan was discharged on July
4th and we enjoyed a quiet night at home watching fireworks on TV.
Finding the right medicine and dosage were a bit challenging and it took
several months for us to find what would work for Ethan. Thankfully, Ethan’s
seizures are now controlled with medication. Although the medicine seems to be
working well, Ethan is still at risk for breakthrough seizures so to help keep
him safe he does wear a soft padded helmet at school.
On July 23rd Ethan
turned 3! We celebrated twice, one party with Pamela’s side of the family where
Ethan shared the festivities with the other July birthdays in the family, and
another party with Jeff’s side of the family. A few days after Ethan’s birthday
our family drove to Lincoln, NE to attend the 2013 GFPD Conference. Ethan had clinic visits with several of the
top PBD-ZSD specialists in North America and we were able to learn about the
latest research that is being done in hopes of discovering new treatment options
and ultimately a cure. We always look forward to this very special opportunity
to be surrounded by specialists and other families who understand this
diagnosis and journey. Pamela continues to serve on the GFPD Board of Directors
as the Registry & Support Group Coordinator and spends much of her time
connecting families around the world whose lives have been changed forever
because of PBD-ZSD.
Ethan started preschool in
August. He attends Pershing Early Learning Center. There are seven kids in
Ethan’s class and each is unique with their own challenges and strengths. The
transition from Early Intervention to the public school system has been somewhat
challenging but we have made adjustments and are pretty settled into the new
routine, new therapists and teachers, and change in services.
This fall and early winter
have brought many other changes. Ethan has mastered walking with his walker,
and can now walk several hundred feet at a time. He even uses it at school to
walk to and from his classroom most days when I drop him off and when I pick
him up. Ethan enjoys walking if you hold his hands and he is even taking
independent steps. On December 13th
Pamela stayed at school to participate in Ethan’s PT session and was able to
video Ethan taking more than 10 independent steps!!! While he is only
consistently taking 4 to 5 independent steps at a time we are elated about the
progress he has made in the last couple of months and we pray that he will
continue to make grow stronger and gain new skills. When Ethan had his sedated
hearing test this in November it showed that Ethan has lost more of his
hearing. We are now in the very beginning stages of what we are praying will
lead to Ethan undergoing surgery for a cochlear implant within the next few
months. We want to do everything we can to provide Ethan with access to the
world of sound.
We continue to be blessed by
Jeff’s job at Caterpillar that allows Pamela to stay home with Ethan. Although
Jeff did have to take three weeks of mandatory unpaid furlough this year we are
thankful that his job was not cut, as there were over 800 layoffs at the
Decatur facility this year. Jeff continues to serve as a deacon at our church
and plays drum in the praise band. Pamela continues to stay home with Ethan and
has enjoyed having just over 2 hours of “free time” Monday through Friday when
Ethan is at school. She gotten back into running and ran in two 5K races this
fall. She even placed 3rd in her age group at our local Turkey Trot
race. After the New Year she is planning to begin training for the Illinois
Half-Marathon that will take place in April 2014.
We can’t thank you enough for
your continued love, support and prayers. They are greatly appreciated. It is
our prayer that in 2014 we would grow closer to God and see Him working in our
daily lives, whether we find ourselves on the mountain top or on the valley
floor. We continue to hold onto His
promises and know that He loves us and that we can trust in that love even when
we don’t understand and can’t help but wonder “why”. Please know that we are
praying that 2014 will be a wonderful year for you as well.
Jeff, Pamela & Ethan
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