The Journey We Are On.....

We just made it back from the eye doctors at the University of Iowa. Dr. Wilkinson is a low vision specialist and Dr. Stone is a retina specialist -- who was actually on the phone with a billionaire donor today who has gotten a fellow billionaire to also donate money towards retina gene therapy, that hopefully one day will help children with peroxisomal disorders and many other rare diseases. It was our first visit with them in over 3 years, but now that we live closer and it i s a 2 and 1/2 hour drive versus a 4 and 1/2 hour drive we'll be going back on a yearly basis. Both doctors were very happy with how well Ethan is using what vision he has and his overall development (the last time they saw Ethan he wasn't even a year old yet). It is so nice to see doctors who know about PBD-ZSD and who really focus not on a number in regards to what Ethan's acuity is, but rather what Ethan is doing with the vision he has. BEST NEWS --- Ethan's far-sightedness is no longer ...

Today, was Ethan's first day of physical therapy in the pool. He had a blast. Ms. Erica, his PT at Easter Seals, was impressed by how well he "swam." They worked on kicking his legs, moving his arms, standing in the shallow end, and going from sit to stand on the steps. He was completely exhausted by the end of nearly an hour workout in the pool. Here's some pictures of Ethan waiting to get in the pool. He was looking around, taking everything in. I don't know how much he understood when I told him he was going to get to go swimming but he seemed to understand that something exciting was about to happen.

Merry Christmas and Happy New Year from the Marshall Family Dear Family & Friends, Merry Christmas and Happy New Year from the Marshall family! This past year has been another year filled with challenges, celebrations, and changes and in the midst of it all, I simply did not make time to write our typical Christmas letter. One of the most significant changes in our lives this year has been our move from Decatur to Peoria. In April, Jeff accepted a new position with Caterpillar and he began working at the Mossville facility (just north of Peoria) at the beginning of June. Ethan and I were able to join Jeff in Peoria in mid-July and it seems like we are just now starting to slow down and settle in to our new life and routines here.  We can’t thank you enough for your continued love, support and prayers. They are greatly appreciated. It is our prayer that in 2015 we would grow closer to God and see Him working in our daily lives. We continue to hold onto His promis...

Ethan's class went to the Bass Pro Shop this morning to see Santa. This was Ethan's first field trip! His first time riding a bus! His first time in Bass Pro! His first time walking around a store! I know I've said it before, but I feel so blessed by Ethan's school experience so far this year and by the amazing teachers, assistants, therapists, and support staff who are part of our team. Thank you so much! My first time on the bus. All loaded up and ready to go! We're here! Get me off this bus and out of this chair! I'm not exactly sure what I think about snow people.... Just walking around, exploring the store. (Ethan had to stop and rest frequently, but he did a TON of walking this morning. It was great. He seemed to really enjoy making choices about where he wanted to go. It was just wonderful to see him explore a completely new environment.) Hi. I think I might need one of these! Visiting with Santa. I'm done, ...

We took Ethan's walker to church today. I only recorded a few seconds, but he walked around for probably 5 minutes of more exploring the church hallways and the gym. After resting for a few minutes he walked a little bit more, but we could tell he was worn out. Click here to view the video.

Although we have not yet become members of the church we've been attending regularly since moving to Peoria, we are starting to feel more connected, getting to know more people, and are feeling very blessed that we've been welcomed with open arms and hearts. Finding a church home is hard for anyone, but when you add having a child with special needs to the mix, that often adds an entirely different layer of complexity to the situation. This morning we had a meeting with Ethan's "team." At this time seven ladies (and a possible 8th) have signed on to be Ethan's one-on-one in the nursery so that Jeff and I can attend Bible Study (Sunday School) and the Worship service. We didn't get a chance to meet all of his team members this morning, as some of them had things that kept them away from church today, but those that we did meet seemed to be thrilled about getting to spend time with Ethan. Ethan is in the "crawler" room at church, which seems to ...

Happy Halloween! Ethan has been getting a little bit stronger each day. We are so thankful to his therapists and teachers for helping him get back some of his mobility. This past week he has been working on steering his walker. Want to see Ehan on the move? Click here .