More Windows...

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?

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?

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?!

(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.