The Journey We Are On.....

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...