The Journey We Are On.....

Another little one with PBD has left the earthly arms of his parents for the heavenly arms of the Lord. Please pray for the Bartosiewicz family of CT. Their little one Justin passed away today. He would have been two years old on Wednesday. Justin Bartosiewicz, November 16, 2009 - November 14, 2011

We had a wonderful weekend visiting with the Gamble and Maag families. It was so wonderful to see our friends and their little ones. Melissa and Brant's daughter, Ginny is three. Shannon and Vicky have two daughters, Clancy who is healthy, and an amazing big sister to Kenna, who is also three and has PBD like Ginny and Ethan. These women and their families are a huge blessing to me and Jeff. Spending the weekend with them was just what we needed in the midst of all the hectic stuff with trying to get the house move-in ready. It also gives us so much hope for Ethan. While all three families know that the future truly is in the Lord's hand, it is encouraging to see two little ones that are thriving against the odds! Kenna, Ginny & Ethan at the St. Louis Zoo!

Ethan has been on the experimental medicine for a month now.... so we started this morning of with a fasting blood draw at DMH. In addition to the liver panel test he also had his blood drawn to check his ACTH and Cortisol levels. The liver panel is to check to make sure that the medicine isn't causing any adverse affects on his liver. As long as his liver panel results have stayed the same (they have been elevated since birth due to PBD) and have not worsened then we will begin slowly increasing the dose of Cystadane (betaine). The ACTH and Cortisol tests are routine tests that Ethan gets every six months to monitor his adrenal function. For children with PBD the risk for them to have adrenal insufficiency is high, especially after the age of 1. So, to be proactive, Ethan has his measured every six months so that if he ever develops this problem we can hopefully catch it quickly and begin treating it with the proper medication. Otherwise everything else has been pretty "nor...

Another precious little one is in the arms of Jesus today. Please pray for the Wolfe-Saunsoci family of Nebraska as their little boy Taysen has left this world for his heavenly home with the Lord. Please pray for strength and comfort that only the Lord can give. Taysen is the 16th child in our support group that has passed away this year. I hate peroxisomal biogenesis disorders (PBDs)! Taysen Lewis Wolfe-Saunsoci, May 13, 2011 - November 9, 2011

This year Ethan was a monkey for Halloween. We attended our church's "Eats Before Treats," and then headed over to Ethan's great grandparents' house to visit. We then headed home so Ethan could have some dinner. It was a great evening! Our little monkey! Daddy & Ethan at our church's "Eats Before Treats" Ethan and his cousin Grace visiting with their Great Grandparents.

Another little one with PBD entered heaven today. This has been a really rough week - I hate peroxisomal biogenesis disorder! While the Shephered family has hope because they know that their daughter, Kyarah, is with Jesus, their hearts and arms still ache. Please keep their family and all the families impacted by PBDs in your prayers. Kyarah, 1/11/2011 - 10/29/2011

Today was an up and down kind of day. The day started out on a high note with Ethan doing really well in Physical Therapy. I am so proud of him. I know that he is very behind in development compared to typically developing kids, but he is still making progress! Progress is progress, even if it is slow. We will continue to celebrate each and every little milestone, no matter when they occur. Later in the day we had a play date with a good friend and her two little ones. She is a dear friend that I've known for years and a fellow sister in Christ. She has two healthy, typically developing little boys. They are both very cute and are a true blessing to their parents. Unfortunately, it is becoming more difficult for me to be around parents of typically developing kiddos. Ethan has been behind since the beginning, but when babies are really little they don't do alot - but it seems like once they hit about six months typically developing kids zoomed ahead of Ethan and haven...