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!

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! 

Sy Wants You!

Do you happen to have a little extra time in a week that you would like to spend helping out a little blondie?

We are at a point where we have received enough ideas an information to start organizing some fundraisers for Sy's medical costs, so we are officially posting that we need volunteers to help! Whether you are local or overseas, you can help in some way. Please let us know if any of these opportunities interest you:

1. We have received enough information, support, and media coverage to do what Sy would love most: a bowling fundraiser! We would mainly need people to help plan and publicize the super fun event(s). There are several ways to actually raise the funds with this, so we'd need your input and help with that, too. We would need at least 3 people who could jump right in!

2. Are you artistic or crafty? We have a great idea for a small product to sell to help raise funds as well. It's fun, original and creative. This would take a small amount of design and imagination on how to best mass produce these items so we can get them out as fast as possible and then just get the ball rolling. The more the merrier on this one!

3. We have received word from a group that is going to put on an amazing 5K race and family fun run in Sy's name in the Oakland/Winter Garden, FL area. We are scheduling this for September 2011, so we have time, but it takes a lot of time and energy to pull off an event like this and make it quality. The group coordinating the race says that they could use about 5 volunteers right now. You would be responsible for parts like T-shirts, publicizing/registration, water stops, and others! Let us know and we'll pass your name along!

We've been working hard to try to get this going, but things like a new job, homeschooling and getting ready for baby #3 have been getting in the way a bit. We need a great partner like you!

Thanks to all of you who are both passionate and compassionate about getting this boy well! By the way, we're going to blow these events up big, so jump on the wagon...

If interested, please contact us at thelovebus (at) wildmail.com (use the symbol, this is to keep phishing software away) or join "Save Sy's Esophagus" on Facebook and shoot us a message that way.

More Sy Media

Not to bore y'all but I know lots of folks don't get the newspaper anymore... Unfortunately, this link doesn't have the cute bowling pic that was actually in the newspaper article. Enjoy the read!

http://www.wotimes.com/articles/2010/09/08/news/top_stories/news03.txt

News Channel 13 Full Story

This is the 2-minute version of Sy's story. If you would, click on the link and watch. It will up his ratings!! It looks like the story is being syndicated nation-wide. Thanks to all of your for spreading the word!!

http://www.cfnews13.com/article/news/2010/august/143255/Silas-Harger:-The-boy-who-cant-eat

A way to cope!

For the last few weeks, Sy has started a strange habit. We were all ready to start eating (and drinking) dinner one night as usual. Before we began, Sy made a request: "Poppy, can I smell your food?".

At first I thought it would just make it more difficult on the little guy and started to refuse it. Then, I talked to him and asked him if he thought that might make it harder for him to not eat. He said no and that he just wanted to see what it smelled like. With hesitation, I pushed my plate over to him as he took one large, long sniff of the evening's meal. He finished and then stated, "Mmmm, that makes me full!". Without complaining or getting upset, he went on to drink his elemental formula with a smile. What kind of kid with this kind of illness does this?

Since Sy has started, he occassionally asks to smell the day's food items and it seems that it's helping him (somehow) get through his crazy no food diet. Like it wasn't enough to show us self-control by undergoing a liquid diet without a single complaint, he now shows us that with the right attitude, you can still enjoy food without putting it in your mouth. I think it's harder for all of us who watch than it is for him!

Thank you, God for one special little boy!

Sy's Channel 13 News Debut!

Channel 13 news came to our home today to help get the word out about Sy's disease and his love of bowling. They will continue to develop the story in the next day or so, but this is the short blurb they've posted so far! Click the video on the right and keep checking for the full story!

http://www.cfnews13.com/article/news/2010/august/139385/Rare-disease-keeps-child-from-eating-food

Thank you! Thank you!!

Wow!! Just a super quick post to say thanks again for everyone who has been brainstorming and trying to get the word out about Sy!! Keep the ideas coming...

Due to various inquiries regarding donations, we have currently set up an account for Silas/EE but we are going to try to change it to a trust fund, if possible. We will post that info. once it is finalized. Thanks again everyone!

Sy Needs You To Spread the Word!!

We are reaching out to all of you to ask for some critical yet simple help with our son’s health. In case you don’t already know, Silas has struggled with major health issues since birth. After almost four years of seeing doctor after doctor (both medicinal and naturopath docs) who could not figure out his problem, we were finally able to find help in March of this year. It took us traveling to The Center for Eosinophilic Disorders in Cincinnati, Ohio to run extensive tests to find that he has a newly discovered disease called Eosinophilic Esophagitis (EE for short). As of now, they tell us that there is no cure for this condition—only remission.

To keep it simple, Sy has an allergic reaction to all food. This reaction creates a multitude of white blood cells (eosinophils) in his upper and lower esophagus that cause much damage and swelling. Sy’s case is severe enough that he will eventually need a feeding tube. Our recent care from Cincinnati Children’s Hospital (and Heather’s hard work and research) has kept us from reaching that point so far. As of now, doctors are keeping Sy on a single source of nutrition (elemental formula) and have eliminated all foods in order to start at ground zero. It has been painful for us to remove all food from Sy’s diet, but God has performed another miracle in giving him the best attitude of anyone out there (adults included). Somehow, he deeply understands and trusts that we are trying to improve his condition.

Up until now, we have kept our struggles relatively to ourselves but we have finally reached a point where we must ask for help to continue to get our boy the care he needs. Through God’s creative handiwork, most of last year’s treatment and $15,000+ of testing and treatment was covered at 100% because we had already reached our insurance out- of-pocket maximum earlier in the year (from previous doctor visits, of course). However in April, our deductible started over. Through all the financial upheaval we have been through, God has continued to provide open doors for Silas to continue his treatment. Due to the major pay cut we took last year, we were able to get Sy approved for Florida Medicaid and they are playing a role in paying for his continued treatment; however, there are still many costs that are not covered. We are currently battling with Medicaid to get Sy’s formula and his treatment in Cincinnati covered (since it is out of state—even though no doctor/hospital in Florida can handle Sy’s case). His formula alone costs $27.50 per day (about $825 per month).

On top of these expenses, starting in September, we are supposed to start visits to Cincinnati Children’s Hospital every 6 weeks to perform follow up endoscopies (throat camera surgeries) and hopefully get Sy back on the path to eating solid food one at a time. As of right now, we have no way of making the first visit happen, so the total food elimination diet would be a waste and the EE will continue to progress. These trips only take 1-2 days, but on top of the medical expenses, there is still the airfare for one of us to take him, car rental, and lodging to incur. There have been people that God has used in ways we can’t describe to get us this far, but we feel that we must now start planning for the long road ahead.

So, why are we blogging all of this?

We need you to help us brainstorm to find ways to cover the costs of Sy’s future treatments through a large of amount of creativity and fun! We are considering future fundraising events, community awareness/research support of EE, partnering with our team of doctors in Cincinnati, donations of travel rewards/skymiles/car rentals, and many more ideas. Here’s a quick brainstorm:

1. The obvious first one is Sy’s love of bowling. This kid’s hardcore bowling obsession is definitely enough to eliminate this disease! Sy has met Norm Duke (World Champion Bowler) who happens to live in our town and we would love to maybe get him and our local bowling alley involved for a local fundraising event. We would need many hands to get this off the ground and make this successful.

2. We have also considered the idea of selling some simple and inexpensive accessory product to help raise awareness and cover our costs (bracelets, t-shirts, whatever). Any fun ideas?

3. We are looking at contacting several local news stations/newspapers to pitch Sy’s story (The Boy Who Can’t Eat Food) and his great attitude. There have been a few stories like this in the country, but none that we’ve found in the southeast. Does anyone have any contacts or experience with this?

4. Maybe you have a profession or hobby that could help get the word out or hold a benefit event (i.e. dinner, 5K/10K road race, etc.)?

There are many more ideas out there and nothing is too crazy for us to consider! Send us whatever ideas you have or possible contacts to raise awareness or funds. And please, SPREAD THE WORD!!

We’ve really tried to keep this short and to the point, but there’s so much important information to get out. Thanks for taking the time to read this and give it some thought. It means more than you realize (especially to our Sy Sy).

You can contact us via the blog, phone, email, or facebook.