How Goes It?

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!!

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...

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...

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!