The Journey We Are On.....

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...

Have you ever heard of Giving Tuesday? I hadn't until today. You can learn more about this amazing movement on their website . If you are feeling in a giving mood today, would you consider making a donation to the Global Foundation for Peroxisomal Disorders (GFPD). You can do so online or by mail. For more information visit www.thegfpd.org . We are so blessed to be part of the GFPD family. We can't even imagine what our PBD-ZSD journey would be like without the support of other families who understand this diagnosis and how it changes live forever. Thank you for your continued love, support & prayers, Jeff, Pamela & Ethan

As most of you know, the Global Foundation for Peroxisomal Disorders (GFPD) has become our second family since Ethan's diagnosis and we are very involved with the organization. I feel honored to serve on the GFPD Board of Directors as the Registry & Support Group Coordinator. We are a completely volunteer ran organization and all of our Board of Directors are parents of children (living or deceased) impacted by PBD-ZSD. I'd like to invite you to take a few minutes to read GFPD's Winter 2013 President's Letter  and check out what we've been doing this year.

When Ethan turned 3 years old his therapy services through Early Intervention (EI) ended and in August when he started preschool these services were for the most part transferred to the school setting. While he still receives similar services at school, the amount and goals of his therapies are slightly different, and we felt that Ethan would benefit from additional outpatient physical therapy and speech therapy. So Ethan has two physical therapists, Ms. Angie who works with him at school and Ms. Lindy who works with him at the hospital. Although these two ladies make him work hard, I think that they are probably his favorite therapists because they not only let him move but encourage it! Our boy loves to move. During outpatient PT on Thursday Ethan decided to show off and show us just how close he is to taking independent steps. To see Ethan's awesome moves click here . We continue to pray for at least 5 independent steps by Christmas. We are so proud of Ethan and are so ...

One of the local elementary schools is within walking distance of our house. We walked over there this evening to use their playground. Ethan loves walking outside!   Walking in the grass is a lot more work for Ethan, but it is a good workout for him, and we can take his helmet off! :) At the end of the video you can see his "almost" steps. :)     

I graduated from Millikin University in 2004. During my college years I was involved in a number of different organizations and was also proud member of the Big Blue Cross Country and Track teams. During my freshman year at Millikin I decided that I wanted to become involved in Millikin's Greek Life and in the Spring of 2001, I became an initiated member of Alpha Chi Omega . Most people who know me know that I am, and have always been, far from the sorority stereotype portrayed on television or in the movies, but a sorority girl I am. The women that I met during my four years as a collegiate member of Alpha Chi Omega came from different backgrounds and life experiences, and I am proud to say that very few fit into the sorority stereotype -- they were so much more! Although I was involved in sports and several other organizations on campus, I lived with these women and they truly became my family. While I will admit that as the years have passed I have not rema...

Have you heard the song "Bigger Than the Odds" by Matt Vollmar and The Great Romance?     This song is inspired by baby Corey. You might remember that Corey is the first (and so far only) girl that has received flowers from Ethan. Corey was born with PBD-ZSD and only spent a very short time here on Earth before being healed forever in Heaven. Her picture is the last one displayed in the video. Corey's life and legacy of love and faith continue to impact people everyday. I consider myself blessed to know this amazing family and call them my friends. When you hear this song would you please consider praying for Ethan, our family, and all families who have been changed forever because of PBD-ZSD? Thank you!

This has been a great week for Ethan and his walking --- he did amazing during outpatient PT on Monday and then during PT at school on Friday, walking farther than he has ever walked before. Today after church he walked all over the place. In the foyer, sanctuary, and down the hall past the church offices. This evening we had our fall family cookout and Ethan showed off again. We even got a little of it on video.

So, there must be something special about Labor Day weekend. It was Labor Day weekend last year that Ethan began crawling on hands and knees. This weekend he began "walking." Prior to this weekend he would only walk a step or two with his walker. Today he walked across the room! We are so excited!

This afternoon Ethan had his first "official" outpatient physical therapy sessions. Now that he has started preschool he will have PT at school but we know that he will need the extra help/support that he will get through weekly outpatient therapy in addition to what he will receive at school. We are also glad that we will be able to continue working with Ethan's PT, Lindy, who has been with Ethan since he started the STEPS program in August 2012. It is great that she knows Ethan, has been working with him a while, and she can help his school PT understand more about Ethan -- what works, what hasn't, his strengths, what he continues to struggle with, etc. and they will be coordinating in some ways to make sure that we are all working to help Ethan reach new gross motor milestones. Today was Ethan's first day using the parallel bars. He had a great session. This boy really wants to walk, although I am pretty sure that once he gets the hang of it he will be runn...

First, I have to admit that early in this journey I wasn't sure that we would ever see this day. Ethan's preschool experience isn't anything like most preschoolers, but we are here. We made it! It was a very emotional morning for Ethan. Ethan cried ALOT! Jeff took a half day to be with us. Ethan has to wear a helmet at school because he falls over frequently due to his seizures. We just got the helmet on Friday so it is going to take a while for him to get used to it.   We met his teacher and the teacher aids for the room and the PT, SLP and Nurse also stopped by to say hello. Ethan will be receiving PT, OT, Speech & Feeding, Hearing, and Vision services at school. Hopefully these will start next week. Once the therapies begin he will have a lot more structure to his morning, which will be good. The teacher also began collecting the data needed to prove that Ethan needs a one-on-one aid. Today there were 4 kids in his class but by the end of September there will...

Our family has been looking forward to the 2013 GFPD Family & Scientific Conference since we left the 2012 conference. It is the one week out of the year we get to spend surrounded by other families who "get it" and understand this diagnosis/journey/life. We are blessed that in addition to families who have been forever changed because of PBD-ZSD, many of the top PBD-ZSD specialists from North America attend and get a chance to present their research, share what they have been doing the past year, what they are hoping to do in the next year and interact with our families! These specialists are truly "our doctors/scientists" and we love them and consider them part of our GFPD family. Our GFPD family has also expanded in the last couple of years to include some amazing ladies who Thursday, July 24th We left our house at 6 o'clock in the morning for the journey west. Ethan did amazingly well, all things considered. We arrived in Lincoln, NE around 3:30pm. Af...