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!!

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!

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.

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!!

Long time, no writing...

Wow! I just realized how long it has been! I update this soon!!!!

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!!

The Low Down...

Home Sweet Home! It's never felt so good--although I could go for a round 3 of Skyline Chili about now!

So a lot of you are wanting to know what Eosinophilic Esophagitis (EE) is and what does that mean for Sy Sy. Today I will just cover what EE is and tomorrow I'll try post more about our course of action (or treatment plan although I don't like to call it that).

Very briefly:

Eosinophils are a type of white blood cell; they are both good and bad. Our bodies need them to fight infection and they are good depending on where they are found in the body and if they are at the appropriate levels. However, they are NOT typically found in the esophagus--as in not at all, zero, zilch.

After completing another endoscopy, we found that Sy Sy has a ton of them in his esophagus. The eosinophils damage his esophagus and cause severe swelling. Left untreated, it will continue to get worse (which it already has) and will cause stricture (or narrowing). This causes food to get stuck and difficulty with swallowing--all of which can lead to a feeding tube. As it progresses, the damage may be irreversible. It is also tough on his immune system and researchers are now thinking of EE as an autoimmune disorder. EE has also contributed/caused Sy's his insane reflux, allergies and asthma.

As I mentioned in an earlier post, there is no cure but the disease can be managed. It can go into points of remission and then flare up again for no apparent reason. They only discovered EE 11 years ago so the research piece is huge. As of now the treatment pathways are either through diet therapy or drug therapy. The drug therapy is still in clinical trials and has not been approved by the FDA yet.

So there you have in a nutshell!! Stay tuned for what the plans are to help our boy...