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!
Monday, August 16, 2010
Tuesday, August 10, 2010
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.
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.
Monday, July 19, 2010
Sy’s Foodless Birthday!
Who can imagine a birthday without cake--nevermind for a 4 year-old who has once again been requesting a bowling cake for the past year! (He’s already had two bowling cakes in the past!) This will forever be a birthday to remember… Sy turned 4 on July 6th and we wanted to make it extra special since our boy still cannot eat food. His request was to visit his Grammy & Paw Paw in SC and to go to the bowling alley.
I’m mostly posting these pics for anyone out there who has a child with EE. This was a great alternative to a cake. Sy loved it and per usual was all smiles!
Our foodless cake consisted of wrapped boxes filled with fun goodies. Jordan used his mad skills to decorate the boxes into Sy’s beloved bowling cake!
We were able to put toothpicks in the candles and poke them into the boxes.
Still never complaining and all smiles... I love this boy!!
Cutting the first piece…
“Opening” the cake…
And of course, we couldn’t truly celebrate Sy’s birthday without a trip to the bowling alley!!
I’m mostly posting these pics for anyone out there who has a child with EE. This was a great alternative to a cake. Sy loved it and per usual was all smiles!
Our foodless cake consisted of wrapped boxes filled with fun goodies. Jordan used his mad skills to decorate the boxes into Sy’s beloved bowling cake!
We were able to put toothpicks in the candles and poke them into the boxes.
Still never complaining and all smiles... I love this boy!!
Cutting the first piece…
“Opening” the cake…
And of course, we couldn’t truly celebrate Sy’s birthday without a trip to the bowling alley!!
Wednesday, June 16, 2010
Another round of elemental formula, bartender!
Well, Sy’s elemental diet started this past Sunday! He can only consume special, amino acid-based formula and water—no food. Yep, that’s right NO FOOD! Fortunately the formula comes in this juice box type packaging so it makes it a little more fun for him. Our latest game is asking Sy, “So what’s in your juice box today?” He smiles and says, “Milk, eggs, yogurt, “samwich”, ice cream, gum…” The list goes on and on but tends to include those foods that he hasn’t been able to eat (the boy has never had ice cream)!We had some tears the first morning but haven’t had as much a one complaint since. He understands that this is to help him get better. We spend much of our time teaching and training our children about godly character attributes. However, I am finding more and more that God is using Silas to teach ME about true joy, patience, long-suffering, trust, hope and self-control. Granted it’s only been a few days, but his willingness and sweet spirit in all of this just blows all of us away.
Sy will be on this diet for a minimum of 3-months. We will travel back to Cincinnati in September and he’ll have another endoscopy. We’re praying for radical improvement and healing! If so, then we’ll be able to introduce one food (like apples) for two weeks and then travel up to Cincinnati for endoscopies every 6-weeks indefinitely… The goal is to figure out exactly what foods are causing the high white blood cell count and swelling in his esophagus.
So this is Sy’s life for a while… If you live locally and think of it, high five him or give him an extra hug. If you’re lucky, maybe he’ll even tell you what’s in his juice box today!
Wednesday, June 2, 2010
Heads up! Curve ball coming...
First of all, let us just say thank you to everyone who made our trip to Cincinnati possible! We journeyed on a very small 6-seater airplane & dodged multiple storms with minimal sickness. :) Thankfully, our pilot was really great! Jordan even flew the plane during take-off of our last leg. A huge thank you too to our brother for helping us out with our hotel stay. Lots of blessings all around!!
On the flip side, the trip did shock us to say the least. Sy's reflux and outward symptoms had remarkably improved so we were hopeful to get up there and find out that we could start to reintroduce one of foods currently restricted. We were excited to see the results, as was the doctor. Unfortunately, the results of the endoscopy were not as we had hoped. We are still awaiting the results of the biopsy but the doctor says that visually the disease is as active as it was three months ago despite the diet changes. We are now faced with a whole new ballgame. We are now looking at the decision of putting him on a all liquid, amino acid formula diet (with a possible feeding tube). We want to get to the root of the problem of this disease and according to the doctor, we cannot continue on the same path. This will be a huge lifestyle change for all of us. Please pray for healing, wisdom and for the support that we'll need to continue on with this process.
On the upside, God still continues to carry us in his hand and we are excited to see Him work throughout this entire process.
Monday, May 31, 2010
Back to Skyline Land
Howdy folks!
I know I am terrible about keeping up with this blog... However on a positive note, there hasn't been much to blog until today. Sy has been doing so much better on his new diet & drinks! I have seen less reflux in the last 3 months combined than I had seen in one day of his life prior to our February Cincinnati visit. It blows my mind! It's taken almost 4 years but we're finally on the right track! Thank you God!!
So, we are flying back up to Cinci today for a Tuesday follow up appt. and another endoscopy. We are incredibly blessed and fortunate to be flying up with a friend of a friend. We will all be traveling in his 6-seater, single engine airplane. Needless to say, I'm packing plenty of plastic bags and praying for perfect weather both today and tomorrow!! :)
Oh & Sy wants to be sure to tell you that our first stop in Cinci will once again, be Skyline Chili!!
I know I am terrible about keeping up with this blog... However on a positive note, there hasn't been much to blog until today. Sy has been doing so much better on his new diet & drinks! I have seen less reflux in the last 3 months combined than I had seen in one day of his life prior to our February Cincinnati visit. It blows my mind! It's taken almost 4 years but we're finally on the right track! Thank you God!!
So, we are flying back up to Cinci today for a Tuesday follow up appt. and another endoscopy. We are incredibly blessed and fortunate to be flying up with a friend of a friend. We will all be traveling in his 6-seater, single engine airplane. Needless to say, I'm packing plenty of plastic bags and praying for perfect weather both today and tomorrow!! :)
Oh & Sy wants to be sure to tell you that our first stop in Cinci will once again, be Skyline Chili!!
Thursday, April 8, 2010
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