December 27, 2013
Merry Christmas & Happy New Year from the Marshall Family
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