The Journey We Are On.....

 It feels like today was a day of accomplishments! 1) Ethan can now roll from belly to back as well as back to belly! He has done this several times today and both Jeff and I got to witness it! YEAH! 2) Scheduled his evaluation with the developmental vision therapist. 3) Scheduled his evaluation with the occupational therapist. 4) Scheduled appointments with eye specialists at the University of Iowa. And most importantly..... 5) Ethan finally pooped! It had been since Sunday morning. I called the doctor's office around 2pm and before they called back, he finally went... of course, he must have known that I had called. I'm not sure why, but it seems like several of the other kids with Ethan's diagnosis also have digestive system issues.... For now, our doctor has suggested daily prune or pear juice. Hopefully, this will help him become more regular. Prayer Requests -Please pray for all the children and families impacted by PBDs. -Please pray for the success o

Ethan's been on antibiotics since Thursday, and he seems to be feeling a tad bit better. He's still really congested and has tons of snot, but he has had a better appetite today, so that is really good. We had our monthly visit with Ethan's speech language pathologist, Betsy, today. She was excited about Ethan's ability to make and maintain eye contact. She was hoping to hear more constant sounds (right now all he has is the "m") but she was thrilled to see him rolling and trying to sit. The big news of course is that yesterday Ethan was 6 months old. With his disorder that is a big date to get too, and 1 year will be even bigger. I've already told my father-in-law that we'll be having a huge first birthday at the church for this little dude! I continue to pray for a miracle each day, and recognize that God's already been answering our prayers - overall, Ethan is doing so well. My grandma reminded me of something that is important to remember

Ethan isn't feeling so good. He started to seem like he was getting a cold on Wednesday morning and got worse throughout the day and evening. Yesterday morning we headed out in the cold snowy conditions to the doctor's office. He's now on antibiotics, which should hopefully get him feeling better soon. He seemed to sleep much better last night. Prayer Requests -Pray that Ethan's cold will not progress into anything more serious. -Pray for the other PBD kids who are battling illness - it's so tough on our kids.

Last week's visit with our PT went really well. Ethan even showed off for her and rolled from back to stomach several times! :) Overall, she said Ethan is doing really well and we will just keep working with him. We are now working on tripod sitting (the picture is of my dad helping Ethan practice sitting when he came to visit on Sunday). He can sometimes hold himself steady for a few seconds, but he gets tired easily. Jeff had Monday off and was able to be home for our visit with our hearing specialist. It was great to have Jeff at the visit so he could meet Julie and see what we do at these visits. We currently meet with her twice a month, but that may be increasing to every week after Ethan's six month review. We also spoke about having Ethan evaluated by an OT and a vision specialist. Prayer Requests -Please continue to pray for baby Ellie and her family in England. -Please pray for all of the children and families impacted by PBDs.

Last week was a pretty quiet week, but we have big news - Ethan reached a major milestone this past week - rolling from back to stomach. He started doing this last Monday, and by Tuesday nothing could stop him! We had Grandma and Grandpa Marshall over to see Ethan's "new trick" on Tuesday evening and then Wednesday when Grammy Chambliss came to visit (and go with us to the ENT) she got to see him roll as well! I must admit, he is still working at getting both arms free after rolling, one is usually stuck underneath him which frustrates him, but he's turned into a little rolling machine. We are so excited! On Wednesday we went over to Springfield to see Ethan's ENT. Dr. Bauer is great and was very encouraged by how great Ethan looks. She told us to come back in six months for another checkup, but otherwise she didn't have any concerns at this time. Dr. Bauer and our audiologist are very proactive with Ethan and know that if his hearing loss progresses to

My sister-in-law, a senior in high school, wrote this poem and presented it to Jeff and I for Christmas. I thought that I'd share it with everyone. Miracle in Progress by Kristin M. Marshall (2010) My eyes light up when I see a baby's face. Cute little fingers, and eyes so bright. I was excited when Ethan was born. His parents were filled with delight. We soon discovered that he wasn't quite normal; All children are special in a way. But young Ethan may lose his hearing or sight, And the only thing to do is pray. My insides twist around in a knot When I see my mother's silent tears --- We know he will be made fun of, Laughed at in high school we fear. I hate the thought of sweet Ethan Living with hardships in life. Even his kind, loving parents Will deal with struggles and strife. Though through it all we'll remember, God has a plan for him too. But for now we will call him "my pumpkin," And keep whispering, "I love y

As we begin this new year, can I just say that 2010 didn’t turn out exactly like I would have expected. However, I know that I still have so much to be thankful for, and my prayer for the new year is that we will continue to always seek God’s guidance, direction, and blessing as we live each day, and cherish each one that He will allow us to share with Ethan. As we celebrated Christmas with family and friends this year I couldn’t help but think about how much has changed since this time last year. It was at Christmas last year that we excitedly shared with our family and friends that we were pregnant. A little over five months ago, I was so ready for the world to meet little Ethan, and just two days after his due date he arrived. A little over four months ago we had our world shattered when Ethan was diagnosed with a Peroxisomal Biogenesis Disorder (PBD) also known as the Zellweger's Spectrum of Disorders. Things sure have changed since then. We now have a team of doctors and ther