Say What?!

(The boy who can't eat begged me to take this picture of him!)

Well, after another trip to the Cincinnati Children's Hospital last week, we are at another standstill.

When getting the update immediately after the surgery, we were encouraged to hear that Sy's esophagus was looking much better. It should look this way because the kid has been without food for the last several months so there should be no irritants. The other side of that conversation, however, was a bit more disheartening. Because we have tried many different methods to get to the root of the issue (and failed), his doctor said we are running out of treatment options. That's really hard to hear when you feel no closer to a solution.

We also received news this week about the results of the biopsies that were taken during the surgery. We were expecting good results to follow the good visual reports from before, but we were wrong. According to the eosinophil count, the disease is still active in his esophagus! Even with this poor boy eating no food at all, we still can't keep him in the clear. We have to find a way for Sy to eat and be healthy...

So in all of this, we know that God must be up to something bigger and greater! We are praying and asking that new doors for treatment would open. We need wisdom and discernment concerning this and we're hopeful that the best direction we need to head in will be obvious. We are currently at a dead end, but we know that is when God does his best work. Sy, of course, is still smiling and trusting us that he is on the right path. Somedays it hard when you're not even sure you are on a path at all. His latest question is, "Mommy and Poppy, are you praying for God to heal me every night?" His faith is unshakeable and he believes without a doubt that he will be eating like the rest of us one day soon. His faith has strengthened our faith for sure.

This is not meant to be a downer post. We just want to keep y'all up to date. Thanks for any prayers you can offer for Sy Sy. We'll try to be better about posting!

Eat Mor, Sy!

Check this out! Some of the fantastic people at Sy's school have done something amazing to bless our family.

By partnering with a local Chick-fil-A, Sy's school will be selling their calendars as a fundraiser for Sy. Everyone loves their calendars and the coupons inside pay back the cost of the calendar multiple times. Through Chick-fil-A's generosity, the calendars will cost $7 and $4 of this will be going directly to Sy's medical account. The Cows will be generating a lot of Moolah...get it? You can laugh. No? Geez, tough crowd!

Each calendar sold covers the cost of one of his elemental formula juiceboxes. Sy currently needs to drink 6-7 per day for his nutrional needs, so we are hoping for great sales! We will let you know the final outcome!

Sorry Chick-fil-A, that Sy can't pay you back by eating your food, but he does like the smell of it!

Carried On

After leaving the Cinci Children's Hospital a few weeks ago, we were overwhelmed with disappointment and discouragement after learning Silas had failed his food trials. Although we were choosing to rejoice in God's sovereign plan, there were moments of feeling like the journey was hopeless (as one doctor had told us before), long, expensive, and downright lonely. Many of our questions in regards to Sy's medical care just don't have answers at this point...

1. The docs don't know the long-term effect of the medicinal formula that Sy drinks each day.
2. Sy has failed so many food tests/trials that the hope of him ever being on a "normal" diet seems unlikely at this time (outside of a miracle and/or cure).
3. The option of heavy steroids poses many risks and once off of these meds, the disease comes immediately back.

Needless to say, we were at a loss and sometimes we're hesitant to share the reality of Sy's condition because, quite frankly, we feel like people are probably just plain sick of hearing about it. We KNOW we are blessed beyond measure and we never want to complain. However, the thought of the journey ahead is, at times, quite daunting.

BUT I love how GOD's plan is so much greater than our limited perspective. In the moment of our despair, GOD knew what was to come...

"Come to me all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls." Matthew 11:29-30

Our community around us has just truly embraced us and carried us. Their love and support of Silas is what keeps him (and us) going. Seriously, I don't think he could handle the cards he's been dealt without the love he feels from everyone around him.

Here are just a few brief stories from the last couple of weeks:

*Silas is homeschooled but attends Classical Conversations on Tuesdays. The director, Jody Scott, shared a story last week about a 10-year old girl who told her mother that she would not be having lunch on Tuesdays because she doesn't want Silas to be the only one not eating at school. Wow!

*We've also learned that a friend of ours (who is a fabulous hairstylist) is doing back-to-school haircuts (this Friday) to raise support for Sy's Trust Fund.

*A 12-year old girl in our neighborhood is selling amazing hair bows, headbands, and stationary and donates a portion of the proceeds to Sy's medical costs.

*Another 12-year old friend is babysitting and is generously giving a percentage of what she earns to Sy.

*A couple of weeks ago, our whole church body spent a day fasting and in prayer for our boy.

Wow! ... Wow! ... Wow! ... Wow!

So I love GOD's timing... Just when things seemed hopeless, HE showed up in an enormous way and is using the body of Christ to walk this journey with us and even at times, carry us.

So thank you all for sharing your words of kindness, your hugs, your love, your finances, and your great ideas and acts of service. Little do you know that you have been the very arms of GOD to us!

Just Checking In!

Hey y'all!

Just wanted to put up a quick post with an update on Sy.

Sy has adjusted quite well to going back to his liquid diet and doing away with the few foods he was able to eat. He has, however, increased his desire to smell foods around the dinner table. Again, there has been no complaining and I think if Sy had to choose between eating and Angry Birds, the birds would come out on top. I guarantee he could take most of you if you are up for the challenge!

Anyway, we just ask for your prayers as we continue to find the exact path that Sy needs to walk. Please pray that Sy can get all the calories he needs in a day (by mouth). He's been struggling to drink enough each day. He's already tall and thin (size 2 shoe already) and he needs a little more meat on his bones. He also starts school next week and will need to practice extra self-control as all his friends eat everything around him.

Thanks for all of you who keep our boy in your thoughts and prayers.

Can You Hack It?

Tomorrow, August 3, our community will be gathering around Silas and joining him on a 24-hour liquid diet fast. As we think about the place food has in our lives, we will pause and pray for Sy and all those who are struggling with Eosinophilic Esophagitis. Please join us as we go through our day with only water or juice. We will work to help Sy find a way back to eating... It's only one day! 

We Just Couldn't Do It...

As we decompress from Sy's last visit to Cincinnati Children's Hospital and start over again on another long road with his health, we stop and realize the people and their blessings that surround us in the middle of our journey. We are blessed because of all of you who give of your prayers, you who give your time, you who give of your resources, you who read this blog, you who post thoughtful comments and send emails, you who give our little boy big hugs, you who take the time to understand Sy's struggles, you who make sure that Sy doesn't feel left out, and so much more...

Just tonight, as we talked on the phone, we began to try to understand what it is that God is doing with our family. We have many obstacles facing our family right now and we began to shed a few tears together as we try to figure out how to deal with Sy's health and the emotional toll it has on the both of us. However, we want you to know that we are able to continue to move forward because of the gracious encouragement that we receive from people like you.

Sy has come so far and it's almost unbelievable how many great options (like traveling to Cincinnati for top-notch treatment) have become available when we never imagined they would. We just want all of you to know that our family stands and moves forward because of your support... All I can say is we are humbled and more than appreciative of what all of you have done for us.

We just couldn't do it....without you! Thank you!

Consider It Pure Joy...

My heart is heavy and these words keep ringing in my head tonight... "Consider it PURE JOY, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything." James 1:2-4

Pure joy? Not blemished or partial, half-hearted joy but PURE, unadulterated and authentic JOY?

How do I exude this joy as I tell my son that he's failed this food trials today? How do I explain to him that he is allergic to ALL foods--that his body battles itself every time he takes a bite? How do I break the news that I have to take away the 5 foods he's been able to enjoy and go back to solely a liquid, medicinal formula diet? And all the while, he has to stay joyful in the process? ......................................................

Because God tells me to. Sometimes I get frustrated that God is having to use my son to grow MY character but then I think about how God has used these "hurdles" to deeply grow all of us. Strength in weakness... Beauty in brokenness...

Food is a basic necessity of life--we deal with it every day--at almost every social event, play date, school function, the list goes on and on. The only way to walk through this valley is to have HOPE and JOY in ALL circumstances.

Recently when talking to Sy about heaven, his big, blue eyes lit up as he asked, "Will I be able to eat all 'fewds' in heaven?" Needless to say, he has great hope and is stoked to get there!

So I trust... I have faith that God is using this for the greater good, for OUR greater growth, and HIS greater glory!

So even tonight as I sit here and struggle to feel it, I. CHOOSE. JOY!!!

Big Day in Cincinnati!

Hey everyone,

We are just asking for your prayers as we sit and wait to take Sy in for another endoscopy here in Ohio. We have added a few more foods to his diet and we've had a few new symptoms pop up, so we're a little apprehensive. We know that God has taken great care of our little champ and we know without a doubt that He will continue to do so!

Sy just enjoyed his 5th birthday, so we are praying that this will be his year for a breakthrough in his treatment. We are also asking for wisdom as we have many decisions to make after we get the results.

We will let you know how it goes. Thanks for your help in keeping our sweet boy healthy!

Sy Takes Five!

Well, today is a big day. Sy is turning 5 years old!

It just seems like yesterday when this special little guy entered the world and began taking us all on the adventure of his life. Even though Sy has encountered many obstacles, he continues to shine through every one with a big smile. He blesses our family every day and we are glad to have his attitude and patience around us when it comes to dealing with life's curveballs.

This birthday will be another one without a real cake, pizza, and ice cream, but Sy will still celebrate in full force with his 5 whole foods. Wow, that just hit me. 5 years of being alive and only 1 ingredient for every year. We hope to pick up the pace a little!

So we just wanted to take a minute to say Happy Birthday to our little boy and let you know how special he really is to us...

We love you, Mr. Man! Your smile is contagious and you are an amazing gift from God. We are proud of you and love you more than words can express. Four was a mighty year for you... You got to meet your all-time hero, Norm Duke; you fell in random love with "Ohio Steak;" you spent most of the year solely living off of your "juice boxes;" you became a big brother; and most importantly, you asked Jesus into your heart and began your adventure with Him. What a year! We couldn't ask for more and we can't wait to see what the Big 5 brings!!!

Sy is Joining A Motorcycle Gang!

Hello everyone! Please come join us for an adventure that you won't forget. This is another person in our lives who has taken her time to help Sy get the care he needs...We are pumped!

POKER RUN TO BENEFIT “SAVE SY’S ESOPHOGUS”
SATURDAY MAY 14, 2011
FIRST VEHICLE OUT AT 10:00 AM (ALL KINDS WELCOME!)
START: AMERICAN LEGION IN CLERMONT, 1063 WEST DESOTO STREET
LAST STOP: CODY JACKS OYSTER BAR IN MINNEOLA - LAST POKER HAND

$10 PER RIDER

SCAVENGER HUNT - 50/50 RAFFLE - GREAT GRAND PRIZE - LIVE MUSIC - $7 PLATED LUNCH - $1 DRAFTS

If you don't know what a poker run is, don't feel bad. We didn't either. Just think of a bunch of people in cars and on motorcycles enjoying the great Florida weather, having a great time, and playing a game all at once. Sy is looking forward to hanging out with a bunch of really cool people and tearing up our county! Also, you can click here for an official description!

So, don't just sit around and let your Saturday be boring! Come do something that is unique and a blast! We dare ya...

It's Just Not Enough...

This blog is quite a bit overdue, but there's something we just have to write.

Our family was speaking yesterday about the long road we've travelled with Sy over the last year. As we look back, we think of SO many people who have helped us get Sy's health to where it is today. It is amazing to look at the past blogs and see what has transpired. Whether it's been help with paying for his elemental juice boxes when he was down to his last few, donating frequent flyer miles or hotel points, holding a super fun auction, bowling with Mr. Duke, giving Sy hugs, and so much more, we have been blessed beyond our wildest dreams while trying to get our little guy taken care of.

There are so many of you who deserve more than a thank you; however, we want to make sure that all of you understand how much we appreciate how you've helped carry our family.

This post is to tell each of you the biggest THANK YOU that we can come up with. Thank you for your caring attitude, support, generousity, time, energy, and love...with all of this, we will continue to push forward and overcome this disease!

A Day To Remember!

What a day! Sy is on the local Channel 13 news today with his favorite all-time, World Champion bowler, Norm Duke! Please watch!!!

http://www.cfnews13.com/video?clip=http://static.cfnews13.com/newsvideo/cfn/Strikes-For-Sy-0228.flv

Also, please take a moment to visit www.strikesforsy.com. Thank you so much!!

Indescribable Love!

This month, our family got to experience something amazing...

As you know, we have struggled to keep a healthy rhythm of life with all the changes happening AND trying to figure out how to continue Sy's treatment in Cincinnati. We had been praying that someone would come along, see Sy's situation, and help us fight the battle to keep him healthy. Well, that person showed up and we cannot believe what she has pulled off! More on her in a minute, but let us first tell you about the spectacular event that was held.

The silent auction was beyond words. We saw a huge group of people come together to put this on and make it so much fun! We thought that there would maybe be 10-20 nice items,  but that expectation was a little low! As the coordinator of this event built momentum, more and more people saw how they could help and brought items to auction to help raise money for our little boy. Someone even went as far as to make our tables look like this was a Hollywood event! People donated a flat screen TV, sporting event tickets, autographed sportswear, Universal Orlando tickets, a week vacation at a huge private beach house, custom art, gift baskets, and so much more! Even multiple local merchants came from all over to donate their services or gift certificates. Over 60 items like this! Over $6000 was raised to be deposited into Sy's trust for travel expenses & medical costs. Thank you to everyone who donated items, volunteered your time, participated in the bidding, and came to have a great time. This means more to us than you realize...

And here's the person who has started all this love...

Her name is Meredith Rosser and she has blessed Sy (and all of us) beyond our dreams. Meredith put so many hours into making phone calls, working out logistics, networking, passing out flyers, posting on Facebook, driving everywhere to pick up items, hiring professionals, and so much more. There are not enough words to express the gratitude and love we have felt. Thank you so much, Meredith. You are our answer to prayer!

And here's the best part...she's not even done yet.

Ready for a Silent Party?

Hello friends! Be sure not to miss Sy's Silent Auction this Saturday at Axum Coffee in Winter Garden, FL from 6-9 p.m. Lots of big crowds, big items, and big fun! Also, we are still in need of 25 volunteers for 1.5 hours. We need help with setup, bidder service, and teardown to make this thing happen!

From YouTube to Real Life!

Well, Sy recently was able to achieve his biggest dream ever!

Last month, we received a phone call inviting our family to the South Lake Kiwanis meeting to hear more about Sy's story and EE. They also mentioned that there would be a special guest that wanted to hang out with our son.

When we arrived, Sy got to meet his bowling hero, NORM DUKE! Sy has spent countless hours in front of the computer watching PBA World Champion, Mr. Duke, bowl perfect games and carefully watching his techniques. After watching, Sy always gets out his favorite foam bowling set and pretends to be Mr. Duke.

Norm had a chance to speak at the meeting and brought Silas up front for a few surprises. Sy received autographed pictures, stickers, an autographed bowling towel & t-shirts, Norm's autographed jersey from last season's PBA tour (that he wears all the time), and a recently released Norm Duke bowling instructional DVD (that has fantastic tips by the way). It was unreal!

After the meeting, Norm gave us another surprise and asked Sy to come to the bowling alley and bowl a few games! It was so much fun to watch this boy who has had food taken away get to indulge in his favorite sport with his favorite bowler. What a day!

Thank you to Gary Tolley (who orchestrated this event), the South Lake Kiwanis, ADvantageous Media Partners (who documented the whole thing), and Norm Duke for sharing your time and love with our Sy Sy!