Sunday, May 1st - Great day!

Today we were able to get up and around early enough to get to Bible Study as well as Worship service at church. It was a great morning. During Bible Study we watched a video by Louie Giglio called "Fruitcake & Ice cream" (watch a portion of the video on YouTube.com) it was an amazing illustration of God's grace and love that He extends to each and everyone of us, we just have to be willing to open our hearts and lives to Him. The Worship service was also great. Our minister, Pastor Tracy, has a friend who is working as a missionary in Japan. She spoke to us live via Skype. Pastor Tracy then spoke to us about the importance of not losing the excitement we had last week as we celebrated the Resurrection.

Ethan was very good in the nursery today. He seems to be getting used to being in the nursery on Sunday mornings and Wednesday nights, and I am getting more comfortable with leaving him. We have wonderful nursery workers, and our friend Tammy takes extra special care of our little man. We feel very blessed to know that we can enjoy Bible Study and Worship knowing that Ethan is safe and loved.

When we got home it was time to play and for me to get some pictures of the little man in his "church clothes."

I just love this smile!

Comments

"God Chooses Mom for Disabled Child" by Erma Bombeck

I don't think this is exactly how it works, but I had to share anyway. I believe with all my heart that God does not make mistakes, and although I will fully admit that it hurts my heart that any child is born (or develops) disabilities and/or life threatening illness, I know that God is sovereign and that He has a divine plan (even when we don't understand it!). I believe that God brought Jeff and I together and that He knew Ethan even as he was growing inside of me. While this is not the journey we would have dreamed of or chosen, and there are going to be times (and have been already) when we struggle, stumble and fall it is our hope that in the end that we will bring glory and honor to the Lord. God Chooses Mom for Disabled Child Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993 Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothe...

Faces of Peroxisomal Biogenesis Disorders

This Saturday we are hosting the first annual Pancakes for PBD benefit. All the proceeds will go to the Global Foundation for Peroxisomal Disorders to help offset the costs for our family and others like us to attend this summer's 2012 Family Support Conference in Orlando, FL. We hope that this will become an annual tradition and allow us to help raise awareness and money for peroxisomal biogenesis disorders. Here are just a few of the faces of PBD.

Big Day - Field Trip to Bass Pro & Easter Seals Family Night at the Playhouse Children's Museum!

Ethan was so tired tonight. He had a busy day at school, which also included a field trip to Bass Pro to meet Santa and to go bowling, and then this evening we had our first visit to the Playhouse Children's Museum. More importantly though, here's a quick medical update: We are thankful to report that for the last two days no one has seen any seizures, so we are hoping and praying that this most recent increase in his medications might be making a difference. Our current neurologist (the one who is 2 hours away) called in a stronger dose for the diazepam. Ethan had been prescribed a 2.5 mg dose by the neurologist who saw him when he was hospitalized last month, but since it has not stopped the seizures the last 2 times it was administered, our neurologist calculated that a 7.5 mg dose is more appropriate for his weight. So our hope is that the new dose will stop the cluster seizures, if they occur again. Obviously, the goal is to not have a need to use the...

The Journey We Are On.....

Search This Blog