January 29, 2012

The Fiery Furnace

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 to death by fire in the burning furnace if they do not change their ways. The men are throne in the furnace and by the grace of God they are saved. King Nebuchadnezzar witnesses the miracle and recognizes that Sadrach, Meshach and Abednego's God is the true God. (King Nebuchadnezzar still has a lot to learn about God though, his story continues for several more chapters in the book of Daniel.)

I want to draw your attention to the young men's response to the king's threat to throw them in the fiery furnace is they don't worship him and his image.

Daniel 3:16-18 (NIV)
16 Shadrach, Meshach and Abednego replied to him, “King Nebuchadnezzar, we do not need to defend ourselves before you in this matter. 17 If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and he will deliver us from Your Majesty’s hand. 18 But even if he does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up.”

I'd like to take the liberty to "personalize" this verse in respect to how our faith in Jesus shapes our feelings about Ethan's disorder.

"The God we serve is able to completely heal Ethan of PBD. God has the power to cure Ethan. But even if He does not, we will not turn away from our God, we will not lose our faith in Jesus Christ."

A good friend asked a few weeks ago how my faith was, in light of Ethan's diagnosis. I won't lie, some days are really tough, and I ask why alot - see the previous post, Why Ethan? Why Anyone? - but just because we question it doesn't mean we don't believe!

Because we know that Ethan is not here by accident. That God has a purpose and plan for our little man. That for some reason, that I won't pretend to "understand," God allowed for Ethan to be born with PBD. But I do know that the Lord will be glorified by Ethan's life. We will choose to praise Him for the amazing son we have and love. Ethan brings joy to nearly anyone who meets him, and because of Ethan's diagnosis I have met some of the most wonderful people in the world, and am honored to call them my friends.

So, like those three young Jewish men, we will remain committed. Committed to a God that CAN heal our son if that is His will. Committed to a God who may choose not to heal our son, if that is His will. Because the Lord's plan for Ethan is bigger than anything that we can imagine and most likely will never know this side of heaven. Please don't think that I don't still pray for Ethan to be healed by the supernatural power of the Lord, because I still pray for this miracle daily!

I am still going to have tough days, I know I will, at times I might have more tough days than good days, but it is then that I must hold tight to the promise found in Romans 8:28, "And we know that in all things God works for the good of those who love him, who have been called according to his purpose."

Prayer Requests
  • That people will come to know the hope that is only found in Jesus.
  • For Ethan and all children with PBD to be healed. For miracles to happen! For a treatment and a cure for PBDs. For the doctors, researchers, therapists, and teachers who dedicate themselves to help children with PBD.
  • For all the families impacted by PBD, especially those whose little one has already been called home to heaven.
  • For the families whose children's health is poor. The winter is really tough on PBD kiddos, and things such as a simple cold or flu can be devastating to our children's health.
  • For Jeff and I to always hold strong to the Lord and each other as we love and cherish Ethan everyday that he is with us here on Earth. Pray that we will always seek to honor and give glory to God.

January 23, 2012

The amazing Ethan is 18 months old today!

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.... :)

January 19, 2012

Prayers for the Grant family of the UK

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

January 18, 2012

Prayers for the Castaneda family from Texas and the Clarke family from the UK

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

January 14, 2012

Ethan signs "eat" and "more"

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!


January 13, 2012

Prayer for the Bean Family

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.

Chili Supper Fundraiser for Baby Bella Bean - January 21st

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, Zack and Stephanie Bean)
including Food, Silent Auction, 50/50 and Music

Saturday, January 21st
5pm to 8pm
Mouse Lodge (800 Broadway, Mt. Vernon, IL)

P.S. Please spread the word to anyone else who knows the family or is in the area! Thank you!

January 12, 2012

Ethan and the Dino!

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!

January 11, 2012

Returning to Normal??

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't been able to get him to accept one yet either... getting his formula is a chore. Especially since Ethan doesn't have a "normal" 17 month old diet we rely on his formula to help bridge the gap (it is sorta like a soy-based Pedisure) to make sure he is getting proper, balanced nutrition.

I had a few deja vu moments today as I started to write down and journal all of Ethan's intake and output - we did this almost everyday for the first year of his life! When were getting ready to leave the hospital yesterday we asked the pediatrician on the floor how much fluid Ethan should be getting a day - he said that the minimum Ethan should be getting is 30 oz. a day to keep him properly hydrated and that 40 oz. a day would be even better. Remember this isn't all fluid intake, because we all get fluid from the foods we eat. So since right now Ethan isn't taking hardly any of his formula and won't take any other fluids, he really needs to eat a LOT of applesauce or other high fluid foods.

So, what did we get down our little man today?
  • 5 oz. of formula by bottle.
  • 16 oz. of applesauce.
  • 2 oz. of soy-based yogurt
  • 4 oz. of baby food
So, we aren't at 30 oz. of fluid, but at least we are getting something in him. In order to get all of that in we are back on every 2 hours schedule throughout the day, but that is fine. I am praying that if he feels even better tomorrow that his appetite and thirst will start returning. Poor kiddo still has an awful cough.

Prayer Requests
  • Please continue to pray for Ethan's recovery and that following this we'll be illness free for the rest of the winter.
  • Please also pray for all little ones everyone that can't fight off these typical childhood illness as easily as others.
  • Please pray for a little baby named Bella. I went to high school with Bella's dad. Bella is in the hospital in St. Louis and is just a couple of weeks old. She is fighting hard and the doctors aren't sure why Bella is sick. Jeff and I know how Bella's mom and dad feel - as we were in their shoes after Ethan was born. Please pray for Bella, her family and for the doctors who are treating her.

January 10, 2012

Headed Home!

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!

January 9, 2012

RSV and the Croup - Day 2

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 today, but no breathing treatments. Just a lot of monitoring and trying to get him to drink. It is rough because there isn't anywhere for Ethan to play and we all just dislike being here. We do know though that this is where we should be in case the RSV and croup take a turn for the worse. These viruses like to stick around for a while, so while we think we might be on an upswing, I think everyone is just being cautious. We don't want to get home just to have to head straight back here, etc.

So, we are preparing ourselves for another night. Last night no one sleep very well. Ethan was up and 1am and again at 3am. At almost 4am when we couldn't calm him down we actually put him between us on the pull-out loveseat. So, we did get a bit of sleep before he was up at 7:30am. He hasn't napped much today, which is a big change from yesterday. Yesterday he was very lethargic and took several naps - which told us that he was feeling really horrible. It's almost 8:30pm and we are hoping that some sleep will be in our near future.

Thank you for your continued prayers. When you pray for us please pray for all of Ethan's little PBD buddies that are fighting off illness as well.

January 8, 2012

RSV and Croup

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.

January 2, 2012

"Pinball Wizard" lyrics

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 others say about people who are not typically developing. I'm sure that most people don't think about what they are saying when they use the "R" word or when they stare at people whose delays are easily visible. For all those people, I wonder, what would they think if someone they loved had physical or mental disabilities. What if their child was born with special needs? After wanting to scream at them, which I haven't done yet but I can't promise that I won't be in a confrontation at sometime over the issue - I want to educate. I want to introduce them to my amazing little man who I love with all my heart.

In someway I know that we are just getting to the place where we are going to get more and more of those stares. Ethan, at this point, looks healthy. He laughs and smiles and when sitting in the stroller or in a shopping cart (which isn't that often) he looks great. Since he always has a hat on to help him keep his hearing aids in people don't see them and since he currently won't wear his glasses, Ethan looks pretty normal. People often make comments about how cute our little man is - we don't deny that he is adorable! What people don't know is that he is visually and hearing impaired, physically and mentally delayed and has a nasty terminal illness that impacts every part of his body - each and every cell in his body has something "wrong" with it.

When people see us and ask how old he is, and I tell them 17 months I get all the "typical" statements - "Oh, I bet he is getting into everything." "I'm sure he is a handful." "Keeps you busy, huh." etc. Sometimes I just politely nod and try to move on. Sometimes I say that he has special needs, so he's behind. As Ethan grows, it will become more obvious - he'll get too big to be in the stroller or riding in the shopping cart, someday he'll be walking with his walker, he'll bond with his hearing aids and won't have to wear hats to keep them in, etc. You know the what the weird thing is about all of those things - I HOPE AND PRAY that Ethan makes each of those milestones! The very things that will make him "stand out" are things that we will be thrilled about! They all mean PROGRESS!

So, what does the Lord have in store for us in 2012. We don't know. I pray for comfort, peace and blessings. I pray for Ethan to continue to make progress and stay healthy. I pray that he will continue amazing everyone as he writes his own PBD story.

Please pray:
  • That 2012 will be the year that many people open their hearts and minds to Jesus. That it will be the beginning of their new life in Christ.
  • That our GFPD families will feel the Lord's comfort, peace and joy this year.
  • That children with PBDs will remain healthy and strong, making progress in their own way.
  • That new families who face the PBD diagnosis will be able to find The Global Foundation for Peroxisomal Disorders and know that they are NOT ALONE!
  • That our Special Connections group at Baby TALK will continue to minister to more families in Central Illinois who have children with special needs and that together we can work for making our communities a safer and more accepting place for families and children with special needs.
  •  That I will draw nearer to my Savior and hold on to Him for ALL my needs.

January 1, 2012

Christmas 2011 - Part 2

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!