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!!!
Showing posts with label Cincinnati Children's Hospital. Show all posts
Showing posts with label Cincinnati Children's Hospital. Show all posts
Monday, July 25, 2011
Sunday, July 24, 2011
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!
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!
Monday, October 25, 2010
Still Alive?
So where in the heck have we been, you ask? Why the long delay in posting? Well, here's a short rundown of our last month:
1. Sy's new little sister (Phoebe) decided to show up over 5 weeks early! Sy is doing a great job of taking care of mom and baby and sometimes has a hard time not poking her when she's asleep. We'll post some pictures of Sy and baby sis soon.
2. Sy's mom had a few complications in the weeks following the pregnancy that resulted in an emergency room visit and subsequent surgery. All is well now and we think we've had enough adventure for now... Back to the "normal" life with EE Boy, his energetic big sis, plus one premature newborn!
3. Sy and his dad made a very "quick" and eventful trip to Cincinnati on October 18. We have details of the trip and news that needs it's own post, so we'll get that up as soon as possible. Stay posted! You'll want to hear what happened...
OK, just tidbits for now. Promise to get more to you all soon. Thanks for sticking with us!
1. Sy's new little sister (Phoebe) decided to show up over 5 weeks early! Sy is doing a great job of taking care of mom and baby and sometimes has a hard time not poking her when she's asleep. We'll post some pictures of Sy and baby sis soon.
2. Sy's mom had a few complications in the weeks following the pregnancy that resulted in an emergency room visit and subsequent surgery. All is well now and we think we've had enough adventure for now... Back to the "normal" life with EE Boy, his energetic big sis, plus one premature newborn!
3. Sy and his dad made a very "quick" and eventful trip to Cincinnati on October 18. We have details of the trip and news that needs it's own post, so we'll get that up as soon as possible. Stay posted! You'll want to hear what happened...
OK, just tidbits for now. Promise to get more to you all soon. Thanks for sticking with us!
Thursday, September 2, 2010
The Daily Commercial Newspaper Headlines
Check out the link above... This was a great story written by Roxanne Brown. We really appreciate all the time and effort she put into this (as well as the photographer). It's so amazing to have such support in our hometown. THANK YOU!!
Tuesday, August 31, 2010
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
http://www.cfnews13.com/article/news/2010/august/143255/Silas-Harger:-The-boy-who-cant-eat
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!!
Sunday, February 28, 2010
Looking ahead...
As promised here is part 2...
We were given two choices as "treatment plans" for Sy.
The first was to be a part of a clinical trial for a drug that they are experimenting with for EE; not much is known about the long-term side effects hence the clinical trial. The paperwork straight-up said that the purpose of this study was "to test the effects (both good and bad) in subjects with EE." They don't know for sure but it seems like there is about a 50% improvement rate.
The other was to do a radical food elimination diet for Sy. We have to remove the following:
1. gluten (wheat, flour products)
2. soy
3. dairy
4. eggs
5. fish/shellfish
6. nuts
7. oranges
For those of you who read food labels, this stuff is in EVERYTHING! However, we've already removed much of this from his diet already so it shouldn't be too traumatic for him. However, he will have to get used to drinking elemental formula as a milk. Any my boy loves his almond milk!! (We stopped dairy 2 years ago.)
It was a tough decision but it seemed like we could possibly get to the bottom of the problem more through the food elimination. If Sy was much older this would be near impossible to do but we have already cut out many of these foods and he is young enough that I still "control" what he eats.
God just seemed to make it clear that for now, this was the best choice. Neither Jordan nor I had a peace about taking the risk with a 3 year-old to do the clinical trial at this point. Sy would also have to potentially stay on the drug forever or until something else is discovered. Once you stop the drug, the EE returns.
So we fly back to Cinci in 3 months to do another endoscopy. (You have to go back every 3 months regardless of whether you do the clinical trial or food elimination.) If his scope comes back bad, then we will re-consider the clinical trial. If his scope comes back improved, we will take the next 3 months to slowing re-introduce a food (i.e. dairy) and then go back in 3 more months to do another scope to see if his body can handle dairy. Make sense? It's not ideal to have to do all of these scopes, but at this point there isn't any other real "marker" to go by. Unfortunately, these trips to Cincinnati will be costly but these docs are the best and there aren't any EE Centers in the southeast.
Wow! Sorry for the lengthy post but just wanted to let you all know. Thanks again for your prayers and support. And no worries, Sy can still eat raisins!!
We were given two choices as "treatment plans" for Sy.
The first was to be a part of a clinical trial for a drug that they are experimenting with for EE; not much is known about the long-term side effects hence the clinical trial. The paperwork straight-up said that the purpose of this study was "to test the effects (both good and bad) in subjects with EE." They don't know for sure but it seems like there is about a 50% improvement rate.
The other was to do a radical food elimination diet for Sy. We have to remove the following:
1. gluten (wheat, flour products)
2. soy
3. dairy
4. eggs
5. fish/shellfish
6. nuts
7. oranges
For those of you who read food labels, this stuff is in EVERYTHING! However, we've already removed much of this from his diet already so it shouldn't be too traumatic for him. However, he will have to get used to drinking elemental formula as a milk. Any my boy loves his almond milk!! (We stopped dairy 2 years ago.)
It was a tough decision but it seemed like we could possibly get to the bottom of the problem more through the food elimination. If Sy was much older this would be near impossible to do but we have already cut out many of these foods and he is young enough that I still "control" what he eats.
God just seemed to make it clear that for now, this was the best choice. Neither Jordan nor I had a peace about taking the risk with a 3 year-old to do the clinical trial at this point. Sy would also have to potentially stay on the drug forever or until something else is discovered. Once you stop the drug, the EE returns.
So we fly back to Cinci in 3 months to do another endoscopy. (You have to go back every 3 months regardless of whether you do the clinical trial or food elimination.) If his scope comes back bad, then we will re-consider the clinical trial. If his scope comes back improved, we will take the next 3 months to slowing re-introduce a food (i.e. dairy) and then go back in 3 more months to do another scope to see if his body can handle dairy. Make sense? It's not ideal to have to do all of these scopes, but at this point there isn't any other real "marker" to go by. Unfortunately, these trips to Cincinnati will be costly but these docs are the best and there aren't any EE Centers in the southeast.
Wow! Sorry for the lengthy post but just wanted to let you all know. Thanks again for your prayers and support. And no worries, Sy can still eat raisins!!
Friday, February 19, 2010
On Our Way...
This is our son, Silas. We are leaving warm Orlando, Florida to take him to the frozen weather of Cincinnati, Ohio. There, we will be taking him to Cincinnati Children's Hospital's Center for Eosinophilic Disorders where we hope to get some answers to health problems that have been around since the first day of his life.
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