The Journey We Are On.....

I think it's official. The wiggle worm is now a combat crawl!

In the Old Testament book of Daniel we read about three young Jewish men: Shadrach, Meshach and Abednego and the Babylonian king, Nebuchadnezzar. The story of these young men, and their friend Daniel, begins in the first chapter of Daniel but it is the events recorded in the third chapter that I want to share with you today. The sermon at church today centered around Daniel 3 and it had me thinking about the "fiery furnace" in my life, Ethan's peroxisomal biogenesis disorder. But first, for those not familiar with the story... Click  here  to read Daniel Chapter 3 in the NIV translation. Click  here  to read Daniel Chapter 3 in the Message paraphrase. We learn that Nebuchadnezzar has passed a decree that EVERYONE is to worship him and his image. Sadrach, Meshach and Abednego, who are Jews, refuse to worship Nebuchadnezzar, because they are followers of the one true God. When Nebuchadnezzar finds out he becomes so furious that he orders them to be put t...

Our beautiful little man is 18 months old today! Here is a little video that we took this evening. Ethan was supposed to be winding down for the evening.... :)

The Lord is calling so many of His little one homes. While I know that these children are now whole, completely healed by the Great Physician it still hurts. We have had three families loose little ones in the last week from our GFPD group. This disease sucks! Please pray for the Grant family of the UK, as thier little boy passed away today. Khian Grant, June 5, 2007 - January 19, 2012

This week two more little ones have left the arms of their parents for the arms of Jesus. These two very special little girls had PBD, just like our Ethan. Please pray for comfort and strength for the Castaneda and Clarke families. Gabriela Faith Castaneda - October 19, 2009 - January 15, 2012 Emilia Grace Clarke - April 13, 2011 - January 2012

Ethan loves to sign "eat/food." Everyone who has ever met our little man in the last several months knows that he will ask anyone for food. We have been working on "more" for months too. While Ethan's "more" is just simply clapping, we'll take it. It took several minutes at lunch today to catch Ethan signing "eat" and "more" but we got it on video! Enjoy!

I found out this evening that little Bella Bean left the arms of her parents for the arms of Jesus today. Please keep this family in your prayers. The fundraiser will go on as scheduled to help with outstanding medical bills and funeral expenses.

Hello everyone. I know that many of you aren't from the Mt. Vernon, IL area where I grew up, but I wanted to try to spread the word to as many people as possible about little baby Bella. She is the daughter of Zack Bean, one of my fellow 2000 MVTHS graduates. Zack and his wife Stephanie Bean had a Bella on December 31st but she isn't doing well. She is very sick and the doctors have not yet been able to figure out why. She is still in the hospital in St. Louis. Please pray for the Bean family. If you are in area on Saturday, Jan. 21st please consider attending the Chili Supper Fundraiser for the family. While I haven't seen Zack since high school, this is family is close to my heart. My husband and I know what it feels like to be searching for answers of why your baby is sick and feeling helpless because there isn't anything you can do but pray. Let's show this family our support. Chili Supper Fundraiser for Baby Bella Bean (and her parents, Za...

Ethan fell in love with a Dino like this one in our church's nursery. My mom made sure that Ethan had one at home. We've been working on putting the balls in the holes for months. He has been getting better everyday. Tonight he decided to show us exactly how good he is!

We were so glad to get home from the hospital yesterday afternoon. Unfortunately, instead of Ethan getting better at home he chose to eat and drink even less last night, which had us really worried. Fortunately, he must have just needed a good night of rest - and he slept in his own bed for almost the whole night! When he woke up this morning around 7:30am I was hoping we'd see a return of our little guy and for the most part today was much better! Jeff stayed home with us today, as he is now sick - which probably only means I'll be next! URG - I hate when families share, germs that is.. Overall, Ethan is acting more like his usual self - definitely not back to 100% but better than he has been. We are continuing to struggle with getting him to drink. He is almost always refusing the bottle and since we have tried every sippy cup and straw cup that I can find - I have a whole huge basket on the top of the fridge as proof - and our Speech Language Pathologist, who we love, hasn...

We will be headed home! The doctors have made their rounds this morning and we've been cleared to go home. The discharge process takes a while, but we are hoping by later this morning we'll all be home again! Ethan was up again from 2:30-4:15am so we all could use some sleep. He is still refusing the bottle, so we are continuing to syringe his formula into him, but thankfully he is still eating applesauce. He will get another dose of the oral steroid this evening and we'll continue to watch him at home and follow up later this week at the doctor's office. Thank you so much for your continued prayers!

We are trying to settle down for our second night here at the hospital. While Ethan's airway seems much less swollen/restricted today, and therefore his breathing is MUCH better, he has started to have more drainage and we are still fighting to get enough fluids in him. When we saw the doctor this morning on her rounds and with how Ethan was feeling earlier in the day we had our hopes up that we would be headed home this evening, but that isn't going to happen. The doctors seem very concerned about his lack of drinking, as are we. He is eating lots of apple sauce and also had some baby food this morning, but is still refusing the bottle. He did drink 3 oz. in the middle of the night last night and then today we've been able to get about 4 oz. in either by syringe or by medicine cup. He screams the whole time. Even with the purees he acts like he wants it but his throat must be really sore because he cries with each bite. Ethan has had two more doses of the oral steroid ...

Ethan was admitted to the hospital this morning. He'd been running a fever for several days and he was having difficulty breathing, so it was time to do something. He's had two breathing treatments and an oral steroid so far today. He has both RSV and the Croup. YUCK! He hasn't been drinking hardly anything but we were able to get him to eat a bit of applesauce. Ethan and I will be here at least through tomorrow as he continues to be monitored. If we aren't able to get anymore fluids in him he will most likely be given an IV. We appreciate your prayers and I'll try to keep everyone updated.

During Christmas week we had the opportunity to spend lots of time with both sides of the family. What a blessing. One evening we had a group over at our house and several people were playing the X Box. A song came on "Rock Band" that I know I've heard before, but I'm not sure if I'd heard it since Ethan's diagnosis. The song, "Pinball Wizard," performed first by The Who in 1969 is about a "deaf, dumb, blind kid" who sure plays a mean pinball. Hearing the song, as a parent of child who is classified as deafblind, made me wonder if anyone else (who doesn't have a special needs child) even thinks about the lyrics as the sing along to the tune. While the song in itself is not explicitly derogatory, it still rubs me the wrong way. Since becoming a mom and having Ethan - remember we got his diagnosis at 4 weeks, so we've know since almost the beginning that Ethan will be "different" - I've become very aware of what othe...

We were able to spend time both before and after Christmas with Jeff's side of the family. Cousin Beth, Ethan, and Grandpa Marshall Lot's of family! Ethan and Anna aren't really sure what to think of each other... Kids and toys everywhere! Cousins Brandon and Elizabeth. This is Elizabeth's first "official" Christmas as part of the family. We are blessed and honored to call her family. After all the traveling, Ethan was happy to be back home!