A Thanksgiving Day Request

Wow! There is so much to be thankful for this year!! I think this has been hands-down one of the most difficult years of our lives but has given us by far the most blessings. Here are just a few:

Jordan’s long time dream of becoming a firefighter has come true thanks to the amazing and humbling support of friends and family.

The birth of our third child when we didn’t think having another baby was possible and her good health despite her early arrival.

Essi starting school and watching her grow into her own little person.

And finally, our on-going journey with Christ… Intensely studying His attributes and how they should be reflected in us… And learning this most practically through none other than our 4 year-old son… Through a Kindergarten lesson, we've learned that "If I stay in Jesus, I will bear much fruit."

Love…Joy…Peace…Patience…Kindness…Goodness…Faithfulness…
Gentleness…Self-control

We have seen Silas display each of these attributes in ways we didn’t think were humanly possible. Of course, he is a typical 4-year boy and he has his moments—especially with his sister. :) But in regards to his disease and what he’s been dealt in his short life so far, we have seen the very hand of God on him. In reality, we have personally encountered Jesus himself. There is something to be said for having faith like a child; we as adults have so much to learn!

This is a little boy who has been sick since the day he was born was but has never complained… Never.

In fact, he presents so well that people have no idea the battle that rages in his little body. It’s easy to forget the severity of his disease when all he does is smile. Really. He even smiles when everyone around him is eating… and often times eating his very favorite things. We know that this is affecting him more than he displays but we pray over him and truly believe that God has given an incredible abundance of these “fruits.” Maybe God knew that in taking away the fruits he could eat, He would be blessing Sy more with the ones of the Spirit.

So, as we will be, we respectfully ask each of you on this major-food centered holiday to stop and say an extra prayer for Silas.

Say an extra prayer of thanksgiving for your health and your ability to eat.

And if you are really up for a challenge, maybe even withhold eating one of your most favorite Thanksgiving treats just to get a glimpse into our Sy Sy’s life. You may be surprised by what you experience! Comment and let us know how it goes.

Thanks for journeying with us and have a Happy Thanksgiving!

Enjoying the "Sweet" Things in Life...

OK, OK, OK... You all have been more than patient!

After not eating a single bite of food since June and getting great reports from the doc in October, Sy has been given the go ahead to start food trials. After working with his allergist and getting some input from Sy himself, he got his first taste of food in the form of.... SWEET POTATOES!!

We sure had a lot of fun making the first batch and watching Sy get so excited. Of course, he had to take a quick sniff, but this time, he was actually able to take a huge bite! All we got during the meal was BIG smiles. He has to eat them completely plain (no spices, oil or butter) so we have to get a little creative. Thinly sliced, baked, cut into fries, etc... Let us know if you think of other fun ways.

Sy will get to try sweet potatoes for a few weeks while we monitor him. As long as everything seems ok, we'll introduce another food soon. Wonder what our little man will choose next? :)

Sy Sets a New Record!

OK, so a little late coming, but we have to tell you about Sy's latest trip to Cincinnati...

Well, to save a little time, let's just say getting there was not half the fun. We had less than 13 hours to make a flight to Cinci, get an endoscopy done, recover, and get back to Orlando. Our trip was almost over before we started because our connecting flight in Charlotte was delayed over 2 hours (which would have caused us to miss our appointment). Fortunately, the people with US Airways listened to our situation and helped us get another flight that was a bit earlier. In order to make it work, I had to contact the Cincinnati Children's Hospital EE Center and let them know that we would be running in and needing to get out quickly to make our flight home. They couldn't make any promises, but they said they would do their best.

Well, the folks in Cinci were ready for us and here's how it went:

2:00 p.m. Picked up from Cinci airport via hospital shuttle

2:15 p.m. Arrived at Cincinnati Children's Hospital and went straight to registration

2:35 p.m. Sy is stripped down, assessed, and prepped for surgery

3:15 p.m. Sy is wheeled back to the OR, gassed, and the endoscopy begins

3:40 p.m. Procedure is complete, consultation with Dr. Franciosi is completed, Sy goes to recovery

3:55 p.m. Walked to recovery where Sy has already been dressed, is awake, and is being discharged

4:05 p.m. Shuttle is waiting outside and we are on our way back to airport to in plenty of time to make our flight home!

Now if that's not incredible customer service (especially at a hospital), then I don't know what is. All of the staff at Cincinnati Children's were so fantastic that I can't even express it. This is why we make the long trip there to get Sy's EE treated. We feel like they are on our side and fighting for our success with this disease! Thank you, Cincinnati Children's!

Here were the results of the procedure:

Dr. Franciosi explained that Sy's elemental diet is working and that his esophagus had cleared up nearly 100%. All of this hard work, suffering, and 4-year-old's sacrifice has not been in vain! We have now been cleared to start Sy on ONE solid food, introduce a few more over the next 3 months, and then return for a follow up endoscopy. Can you believe it?

So what's the food that Sy will be starting on? You'll have to stay tuned to find out!!! Thanks for reading!

Sister Phoebe (not a nun)

 
We would like to introduce you to the newest member of our family!

Meet Phoebe Jewel Harger. She was born on September 29 (5 weeks early!) and weighed in at 5 lbs, 13 oz. Big brother Sy is enjoying waking her up right when she falls asleep and big sister Essi loves to constantly talk to her...a lot. Mommy has had a few complications since the birth (like we need more medical issues in this family), but seems to finally be on the up and up. Poppy's manly voice soothes this gal every time she's upset...even over the phone.

We thank God for our new little bundle and welcome her to the most fun family ever! Go little BumbleBee!

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!

Sy Wants You!

Do you happen to have a little extra time in a week that you would like to spend helping out a little blondie?

We are at a point where we have received enough ideas an information to start organizing some fundraisers for Sy's medical costs, so we are officially posting that we need volunteers to help! Whether you are local or overseas, you can help in some way. Please let us know if any of these opportunities interest you:

1. We have received enough information, support, and media coverage to do what Sy would love most: a bowling fundraiser! We would mainly need people to help plan and publicize the super fun event(s). There are several ways to actually raise the funds with this, so we'd need your input and help with that, too. We would need at least 3 people who could jump right in!

2. Are you artistic or crafty? We have a great idea for a small product to sell to help raise funds as well. It's fun, original and creative. This would take a small amount of design and imagination on how to best mass produce these items so we can get them out as fast as possible and then just get the ball rolling. The more the merrier on this one!

3. We have received word from a group that is going to put on an amazing 5K race and family fun run in Sy's name in the Oakland/Winter Garden, FL area. We are scheduling this for September 2011, so we have time, but it takes a lot of time and energy to pull off an event like this and make it quality. The group coordinating the race says that they could use about 5 volunteers right now. You would be responsible for parts like T-shirts, publicizing/registration, water stops, and others! Let us know and we'll pass your name along!

We've been working hard to try to get this going, but things like a new job, homeschooling and getting ready for baby #3 have been getting in the way a bit. We need a great partner like you!

Thanks to all of you who are both passionate and compassionate about getting this boy well! By the way, we're going to blow these events up big, so jump on the wagon...

If interested, please contact us at thelovebus (at) wildmail.com (use the symbol, this is to keep phishing software away) or join "Save Sy's Esophagus" on Facebook and shoot us a message that way.

More Sy Media

Not to bore y'all but I know lots of folks don't get the newspaper anymore... Unfortunately, this link doesn't have the cute bowling pic that was actually in the newspaper article. Enjoy the read!

http://www.wotimes.com/articles/2010/09/08/news/top_stories/news03.txt