Save Sy!

How Goes It?

2012-02-24T22:14:00.010-05:00

Just a quick post to update y'all on our progress.

Sy has managed to give himself an almost permanently carrot stained Joker smile (look close)...

Sy has been on the therapy for several days now. As we expected, we are overwhelmed with work! We practically live in the kitchen as we prep juices/soup/gruel, clean everything up, and then start the process all over again! Over this time, we have learned how to hone our juicing skills and streamline the process as much as we can. Everyone in the family is committed to helping our one family member who needs it. We are all pitching in to help as Sy cleans up the table and floor, Es dries and puts away dishes, and Bee finds a pencil to write on our walls (grrrr).

Here's our little princess helping out.

As a quick side note, when a 26 week old pregnant lady stands on a tile floor for hours on end in a kitchen, it makes her feet have a sad face. One thoughtful friend sent an unexpected surprise that has turned those feet frowns upside down. A padded kitchen mat! Sweet!

Look at that space age softness! Tempted to put a glass of wine on one end and jump.

Sy, of course, is being a real champ through this whole thing. We do ask for your prayers with one specific issue... Getting the amount of juices down in a day is a tough task for anyone, especially a 5 year-old boy. Another issue that we've encountered is that he will break out in a small rash on his skin around his mouth. An opportunity to place a nasogastric (feeding) tube has become available to us and he actually loves the idea so he won't have to chug-a-lug. God has knocked down our obstacles so far, so we don't expect any different with this. We just need wisdom with every step.

More to come, so stay tuned!

P.S. As far as my diet changes with Sy, I've been amazed at the few noticable changes I've encountered...dropped some excess weight quickly, my appetite has been under better control, and just a better feeling all around. Keep the good changes comin'!

Details!!

2012-02-12T17:54:00.003-05:00

We've had several people asking about what our next steps are going to look like for Sy so here it is in a nutshell...

After coming to the end of the road with traditional medical treatment, we were guided to a particular treatment plan that couldn't be more perfect for someone who can't eat...a therapy of food!!! I know this sounds crazy, but after more hours of research than we'd like to admit and comparing it to what I already know from my medical training, it made total sense. Sy has been on a no or very few food diet for the majority of two years. We have watched Sy develop signs that show his body is taking a toll (skin color, appetite, severe constipation, etc.). In passing, one would think that Sy's health is good (and it is compared to severely ill kids), but as a parent, you can tell when things just aren't right. Everyone knows that the body needs good, pure nutrition, and not the kind that comes out of a lab. Also with the amount of sugar Sy gets from his current artificial nutrition, there is the very real risk of developing type 1 diabetes in the near future. The bottom line is that Sy's body has an autoimmune & GI issue that we have only put on somewhat of a pause for right now. There are more things we could do to just "cover up" the disease, but we want real, lasting health. Sy's body has the systems in place to fight this disorder, but the cells of these systems need the right input to have the maximum healing output. Make sense?

The Gerson Therapy we are about to embark upon is anything but simple. Unfortunately, there's no shortcut and you either do it 100% or you don't. There are major costs of time and money, but this family will sell everything for the health of one of our loved ones. The folks from the Gerson Institute informed us that the amount of time it will take to prep, administer, and clean up each day will run about 8 hours!!! However, we have heard first-hand stories from people who have been amazingly healed from destructive diseases (like stage 4 cancers), but it does come at a great sacrfice. We will walk with him through this!

Below is an example of a condensed and simplified daily schedule for someone on this therapy. Sy's will be modified due to: his age, introducing very specific, organic food to his GI system, and to the systems that need repair. So here is what our new life will look like:

7:00 Wake up
7:15 Enema prep & administration
7:45 Special breakfast prep & juicing; prep and making of gruel*
8:00 Eat breakfast & supplements
8:30 Wash all produce for day (huge amount!), make enema concentrate, make special soup
9:00 More juicing, gruel, & supplements
9:30 More juicing, gruel, & supplements
10:00 More juicing, gruel, & supplements
11:00 More juicing, gruel, & supplements
11:15 Enema prep & administration
12:00 Special lunch prep, more juicing, gruel, & supplements
1:00 Eat special soup
2:00 More juicing, gruel, & supplements
3:00 More juicing, gruel, & supplements
4:00 Enema prep, administration, gruel, & more juicing
5:00 More juicing gruel, & supplements
6:00 Prep special dinner, more juicing, gruel, & supplements
7:00 Eat dinner, more juicing, gruel, & supplements
8:00 Enema prep & administration

*Gruel is made by slow cooking organic oats and then straining the them. The gruel is the white liquid that is left over. Sy will have to drink that every hour.

So this will be on top of my work/school/clinical schedule and Heather's pregnant mom/feeding/homeschooling/cleaning/shopping/dealing with me schedule. No big deal...ha! We repeatedly heard from people that you will easily lose a few years as you dedicate yourself to this and there is no way you can do this without help.

It's very easy to get overwhelmed by everything that is staring us in the face right now; however, we have been led through doors that have miraculously opened and brought us to where we are. We are confident that He will provide where we fall short. It's a new journey and we are excited to for Sy's healing and hope to be able to help others along the way.

To learn more about this therapy, check out these documentaries on youtube, Netflix or Hulu:

*Dying To Have Known

*The Gerson Miracle

*The Beautiful Truth

*Or "like" the Gerson Institute on Facebook.

Stepping Down...

2012-02-04T23:36:00.001-05:00

The last several days have been chocked full of great information! Fortunately, this was exactly what we needed. We are gaining more confidence with every step as doors continued to be opened for Sy's health, but we are learning that we will be forced to make MAJOR changes to our lives to have a shot at Sy's healing. Thank you to those of you who have been praying and providing for us as we explore this new option.

So, what have we learned?

This new therapy option requires an unbelievable amount of dedication and determination before you even start anything. Do we REALLY want Sy to get better? To the point of putting almost everything on hold for it?

This therapy has been researched and proven for over 70 years. You either do it all or you don't. The problem is that doing it all will take more time, energy, and resources than anything we've ever done before (this is an understatement). This is fantastic timing with my 24 hour shifts, my full-time class schedule, and my clinical schedule that is heating up.

We have learned that as our little boy walks this journey, so will the rest of our family. We have allowed Sy to live alone in his foodless world as we all indulge in whatever we want. It's time for us to step down into his world until we all emerge together.

Here is the really amazing thing that has been in my mind as we are here: This new lifestyle and choice for health is an echo of what's required of my faith. Do I trust Him enough to let go of everything I think is essential to allow Him refocus me on those things that have eternal value? Convenience versus my son's health? Distractions versus leading my family? Selfishness versus selflessness? It sounds easy, but it will require more of me than I have. This is what brings me back to Him on a minute by minute basis.

Sy's health journey has been an opportunity to watch chained doors fly open but also an opportunity to turn the hearts of my family toward something worthwhile.

I know this post has been a bit vague. We will be posting more details soon about what is coming our way.

Thanks for reading!

More Windows...

2012-01-29T21:35:00.001-05:00

FYI: We are doing a MAJOR overhaul of the blog so please pardon our appearance. We hope to get the permanent one up and running soon.

So I mentioned in the previous blog that the windows keep flying open for Sy's new therapy but I needed to save those for another entry. So here we go...

I wish I could sit here and list in detail all of the AMAZING blessings that we've received over the course of the last month alone but this entry would be too long. It has been so humbling and I long for the day that we will be the GIVERS instead of the receivers.

To start, we have had a couple of deposits in Sy's account from various folks and two recent fundraisers. One fundraiser was from the Land Of Lakes Montessori School here in Clermont. The students had a Pajama Day fundraiser back in December. The sweetest part was the precious HUGE card they made Sy! He loved it!! We are so grateful to the school and all of its wonderful students for thinking of us!

Secondly, Norm Duke (World Champion bowler) is still raising funds through his Strikes For Sy campaign that he initially started over a year ago. He recently issued us a check that will allow us to go out to the clinic in San Diego for intensive training for Sy's new therapy. This was totally unexpected. Thank you Norm for all you do for Silas and for spreading awareness about EE!

We've also had some other various blessings... We are more than blessed to be living in a community where we take care of one another. God has sustained our family through the loving hearts of those around us. It has been life changing both for us and our children.

Lastly, one of the biggest obstacles for venturing on our new journey with the Gerson Therapy was the cost of some of the supplies--one major appliance in particular. I'll spare all the details but I had a phone call shortly after the new year started with a friend stating that this item had been ordered and would be shipped out soon. I was beyond shocked! This was a major hurdle that needed to be jumped in order to get started and lo and behold, it was done. Speechless. Grateful. Awed. Indebted. Excited. WOW!

We just want to express that we wouldn't be able to get treatment for Silas (both past, present and future) without the loving donations from those of you who have given. That truly blows us away ALL THE TIME. I just hope we say thank you enough!!

A Mere Act Of Kindness?

2012-01-17T16:30:00.001-05:00

One day almost two months ago, I was headed to a friend's birthday luncheon... I was super excited to celebrate my dear friend, but never in a million years did I expect that day to be so extraordinary... nevermind so life changing!

I was riding down to the celebration with another one of my sweet friends when we stopped to unexpectedly pick up the guest of honor's mother-in-law. She was visiting from out of town and was going to join us. I've admired this woman and was looking forward to having some time with her to chat and catch up on a beautiful, November afternoon in Florida.

So in the car we started talking and about 30 minutes or so later, she told me that she keeps updated on Sy and had been thinking of him a lot and proceeded to tell me about a couple of ideas that she had heard about. First of all, I was blown away by the fact that this busy woman who lives states away and doesn't even know our family all that well, takes the time to stay updated on Sy but also spends time thinking of possible treatment options for my son! How amazing is that?

Anyway, she shared with me about this new therapy that has a learning clinic in San Diego and a patient clinic Mexico... As she spoke, things started clicking in my mind and in my heart. I'm sure she thought that it was just another conversation and just a mere act of kindness by sharing some of her ideas and thoughts... However to ME, this was more than an "act of kindness" but rather a conversation prompted by the Holy Spirit himself. She had no idea that this was the prefect conversation spoken at the perfect time. Little did we know that a week later, Sy's doctor in Cincinnati would regrettably be telling us that "we are out of options" upon more failed biopsy results. Ordinarily this would have been completely overwhelming, disheartening, and saddening beyond words. My heart would have been shattered. Instead although a door was definitely closing, God had already opened a window a week earlier.

My friend's mother-in-law shared with me about The Gerson Therapy that day. This therapy has been used to treat many diseases--mostly those who have suffered severe stage four cancer where chemo and radiation have failed. This therapy is often found for those whom the doctors have said, "We are out of options." Granted Sy is not dying by any means, but we've noticed a gradual and steady decline. Jordan and I both have sensed that we're slowly losing his health. This therapy sounded crazy but perfect! At this point, what did we have to lose?

So we've spent the last two months researching and researching. We've read all the positives and all of the criticisms... So we gave it to God. We know He will heal Sy and will provide a way... This therapy was something we desired to pursue, but the regimen and cost are just overwhelming. You see, there is no way that we can do this on our own. It will take a "village" to help us. Although the theory sounds amazing, the reality of it seems almost impossible. But of course with God, nothing is impossible. Absolutely nothing.

Meanwhile, the windows have started flying open... And I mean FLYING!! (I guess those details will have to be for another blog entry.) :)

The point of all of this jibber-jabber is that words of encouragement no matter how small or mere acts of kindness are always needed and the Holy Spirit can use them to radically change or even save people's lives. Literally. That one encouraging conversation two months ago I will forever remember and I know Sy's life will never be the same. Thank you!

http://www.mosaicfl.org/?pg=cG9kY2FzdEVwaXNvZGVz&pid=RXBpc29kZXM=&sb=0&sid=Q2FycnlpbmcgVGhlIEdvc3BlbA==
For a great message, please listen to Carrying the Gospel/Active Kindness...

Happy New Year! Happy New Chapter?

2012-01-07T22:50:00.000-05:00

Once again, it's been way too long since we've blogged. Sometimes it seems like so much effort and I'm not always sure it's worth the time or if anyone even still bothers to read this. However, so many of you so sweetly ask and long for updates with details so I will TRY to be better this year with blogging. ;)

Sy made it through the holidays food free. Can you imagine?! I would struggle to go through the holidays dessert free, nevermind food free! He did get lots of great smells though!!

Some of you may not realize that he STILL failed his last endoscopy (only drinking his elemental formula). That was a huge shocker and even left his medical team baffled. We have seen a decline in his health lately and they felt that we were "out of options." So, we have prayerfully been asking God for direction and researching A LOT!!

There is some potential great news to share on the horizon!

With running into dead ends with Sy's treatment plan, it looked like there would be little hope for him eating anytime soon... or ever. Where could we find the hiding health that we desired for our son? Sy has truly become a prayer warrior and prayed with us that we would have a breakthrough. And a breaking through it has been...

After doing much more research than I care to remember, we have finally had a new option revealed to us that gives a glimmer of some hope. We are still doing our legwork, but over a carefully drawn out course of action, we hope to have Sy starting a new chapter in his little life. We will give more details later and it will be quite intense, but at this point, we have nothing to lose. Nothing.

We'll share more of this journey in days to follow... And, as always, we are asking for your prayers for success wherever we are led.

Please "follow" us if you don't already and feel free to leave a comment. It helps keep up our momentum when we know that folks are actually reading this and do care.

Our family and Silas appreciate y'all more than you realize. Thank you!

Say What?!

2011-11-26T21:37:00.001-05:00

(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!

2011-09-12T21:08:00.000-04:00

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

2011-08-21T21:12:00.000-04:00

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!

2011-08-19T19:59:00.001-04:00

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?

2011-08-02T21:43:00.001-04:00

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...

2011-08-01T21:11:00.000-04:00

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...

2011-07-25T20:57:00.001-04:00

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!

2011-07-24T23:00:00.000-04:00

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!

2011-07-05T22:01:00.004-04:00

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!

2011-04-30T21:49:00.003-04:00

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...

2011-04-30T21:30:00.000-04:00

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!

2011-03-01T19:10:00.000-05:00

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!

2011-01-29T09:18:00.000-05:00

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?

2011-01-10T16:08:00.000-05:00

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!

2011-01-05T21:57:00.003-05:00

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!

A Thanksgiving Day Request

2010-11-25T09:09:00.005-05:00

Wow! There is so much to be thankful for this year!! I think this has been hands-down one of the most difficult years of our lives but has given us by far the most blessings. Here are just a few:

Jordan’s long time dream of becoming a firefighter has come true thanks to the amazing and humbling support of friends and family.

The birth of our third child when we didn’t think having another baby was possible and her good health despite her early arrival.

Essi starting school and watching her grow into her own little person.

And finally, our on-going journey with Christ… Intensely studying His attributes and how they should be reflected in us… And learning this most practically through none other than our 4 year-old son… Through a Kindergarten lesson, we've learned that "If I stay in Jesus, I will bear much fruit."

Love…Joy…Peace…Patience…Kindness…Goodness…Faithfulness…
Gentleness…Self-control

We have seen Silas display each of these attributes in ways we didn’t think were humanly possible. Of course, he is a typical 4-year boy and he has his moments—especially with his sister. :) But in regards to his disease and what he’s been dealt in his short life so far, we have seen the very hand of God on him. In reality, we have personally encountered Jesus himself. There is something to be said for having faith like a child; we as adults have so much to learn!

This is a little boy who has been sick since the day he was born was but has never complained… Never.

In fact, he presents so well that people have no idea the battle that rages in his little body. It’s easy to forget the severity of his disease when all he does is smile. Really. He even smiles when everyone around him is eating… and often times eating his very favorite things. We know that this is affecting him more than he displays but we pray over him and truly believe that God has given an incredible abundance of these “fruits.” Maybe God knew that in taking away the fruits he could eat, He would be blessing Sy more with the ones of the Spirit.

So, as we will be, we respectfully ask each of you on this major-food centered holiday to stop and say an extra prayer for Silas.

Say an extra prayer of thanksgiving for your health and your ability to eat.

And if you are really up for a challenge, maybe even withhold eating one of your most favorite Thanksgiving treats just to get a glimpse into our Sy Sy’s life. You may be surprised by what you experience! Comment and let us know how it goes.

Thanks for journeying with us and have a Happy Thanksgiving!

Enjoying the "Sweet" Things in Life...

2010-11-24T07:59:00.000-05:00

OK, OK, OK... You all have been more than patient!

After not eating a single bite of food since June and getting great reports from the doc in October, Sy has been given the go ahead to start food trials. After working with his allergist and getting some input from Sy himself, he got his first taste of food in the form of.... SWEET POTATOES!!

We sure had a lot of fun making the first batch and watching Sy get so excited. Of course, he had to take a quick sniff, but this time, he was actually able to take a huge bite! All we got during the meal was BIG smiles. He has to eat them completely plain (no spices, oil or butter) so we have to get a little creative. Thinly sliced, baked, cut into fries, etc... Let us know if you think of other fun ways.

Sy will get to try sweet potatoes for a few weeks while we monitor him. As long as everything seems ok, we'll introduce another food soon. Wonder what our little man will choose next? :)

Sy Sets a New Record!

2010-11-05T18:07:00.001-04:00

OK, so a little late coming, but we have to tell you about Sy's latest trip to Cincinnati...

Well, to save a little time, let's just say getting there was not half the fun. We had less than 13 hours to make a flight to Cinci, get an endoscopy done, recover, and get back to Orlando. Our trip was almost over before we started because our connecting flight in Charlotte was delayed over 2 hours (which would have caused us to miss our appointment). Fortunately, the people with US Airways listened to our situation and helped us get another flight that was a bit earlier. In order to make it work, I had to contact the Cincinnati Children's Hospital EE Center and let them know that we would be running in and needing to get out quickly to make our flight home. They couldn't make any promises, but they said they would do their best.

Well, the folks in Cinci were ready for us and here's how it went:

2:00 p.m. Picked up from Cinci airport via hospital shuttle

2:15 p.m. Arrived at Cincinnati Children's Hospital and went straight to registration

2:35 p.m. Sy is stripped down, assessed, and prepped for surgery

3:15 p.m. Sy is wheeled back to the OR, gassed, and the endoscopy begins

3:40 p.m. Procedure is complete, consultation with Dr. Franciosi is completed, Sy goes to recovery

3:55 p.m. Walked to recovery where Sy has already been dressed, is awake, and is being discharged

4:05 p.m. Shuttle is waiting outside and we are on our way back to airport to in plenty of time to make our flight home!

Now if that's not incredible customer service (especially at a hospital), then I don't know what is. All of the staff at Cincinnati Children's were so fantastic that I can't even express it. This is why we make the long trip there to get Sy's EE treated. We feel like they are on our side and fighting for our success with this disease! Thank you, Cincinnati Children's!

Here were the results of the procedure:

Dr. Franciosi explained that Sy's elemental diet is working and that his esophagus had cleared up nearly 100%. All of this hard work, suffering, and 4-year-old's sacrifice has not been in vain! We have now been cleared to start Sy on ONE solid food, introduce a few more over the next 3 months, and then return for a follow up endoscopy. Can you believe it?

So what's the food that Sy will be starting on? You'll have to stay tuned to find out!!! Thanks for reading!

Sister Phoebe (not a nun)

2010-10-29T14:37:00.000-04:00

We would like to introduce you to the newest member of our family!

Meet Phoebe Jewel Harger. She was born on September 29 (5 weeks early!) and weighed in at 5 lbs, 13 oz. Big brother Sy is enjoying waking her up right when she falls asleep and big sister Essi loves to constantly talk to her...a lot. Mommy has had a few complications since the birth (like we need more medical issues in this family), but seems to finally be on the up and up. Poppy's manly voice soothes this gal every time she's upset...even over the phone.

We thank God for our new little bundle and welcome her to the most fun family ever! Go little BumbleBee!