Monday, December 19, 2011

EoE Christmas Poem

This poem was written by a mother of a child with Eosinophilic Esophagitis. Her son has a feeding tube as a result. It reminds us all that we should forget about the hustle and bustle at Christmas so that we can truly celebrate the real meaning of Christmas and the blessings we all share in our lives.

’Twas the night before Christmas, when all through the house
The pump was a whirring, and waking the mouse;

His feeding bag was hung by his bed with care,
In hopes that some nutrition soon would be there;

The children were nestled all snug in their beds,
While visions of eating real food danced in their heads;

G and NG Tubes, each with their caps,
If they’re open, they’ll leak and disturb my kid’s long winter’s nap;

When the pump started beeping, there arose such a clatter,
I sprang from my bed to see what was the matter.

Away to his side, I flew like a flash,
Tore open the covers – saw a kinked line and a rash….

I think of the time that he could eat food.
When people didn’t judge us, some are just rude.

The cakes, cookies, and foods that he cannot eat.
The dream of giving my boy just one food treat,

Has vanished and won’t come back very quick,
No one can cure it, not even St. Nick.

More rapid than lightning the vomiting came,
Eosinophils cause this disease, EGID is the name.

In Greenville, Colorado, Pittsburgh, and Philly!
In Boston, in Texas, in Florida, in Cincinnati!

They work on research, so our kids can grow tall!
Now find a cure today! Please we pray! Work together all!

Dreams of having a typical childhood away fly,
Because of this disease, our children must cry.

Vomiting, pain, diarrhea, and choking,
ulcers, fatigue, another doctor-are you joking?

Enemas, laxatives, surgeries, scopes,
Steroids, tests, biopsies, IVs-yet our kids have hope!

Just when you think this disease has calmed down,
Our kids are faced with another re-bound.

Insurance won’t pay for his special food,
We must fight for everything, we hate to be rude;

A pump and some formula flung on his back,
And another day goes by with him wearing his pack.

His eyes — how they twinkle! His laughter– how merry!
He cannot take even one taste of dairy!

Just a little bit of food he can’t chew with his teeth,
We must steal food away from him like a thief.

One or two safe foods, we learn to cook.
Expensive food stores, all of our money, they took.

Someday he’ll be chubby and plump, like a jolly little elf,
And I’ll laugh when I see him, in spite of myself;

Until then, we all will continue to fight…..

“Merry Christmas to all, and to all a good-night.”

Friday, December 16, 2011

7th Scope

       We all traveled to Greenville, SC for Jordan's 7th scope on November 3rd. Jordan's current diet is fruit, cucumbers, allergen free cookies by Enjoy Life, So Delicious coconut milk ice cream, and Neocate Splash formula.We were able to stay at the Ronald McDonald House only about 10-15 minutes away from the hospital. We received great news  from Dr. Markowitz that Jordan had zero eosinophils! Dr. Johnston, the allergist, told us that Jordan could add sweet potatoes to his diet. Since that time, he has been eating sweet potatoes almost nightly. We will all travel to Greenville again on December 21st and 22nd to have his 8th scope and see Dr. Markowitz and Dr. Johnston. Please continue to keep Jordan in your prayers.

Jordan loved the Playroom at the Ronald McDonald House.

Preparing for the scope


Tuesday, November 1, 2011

Seaboard Festival 5k

So what is better than running 3 miles in the rain and cold? "Running for a Reason" of course. We would like to thank Brian and Jackie Webb and Jeff and Stacy Graves for allowing Jordan's name to be on the t-shirts this year. We are very grateful for everyone who purchased a shirt and the generous donation that was given to us. God's timing continues to be perfect as Jordan will go to Greenville, SC on Wednesday and Thursday of this week. Please be in prayer for Jordan as he endures his 7th scope and for God to continue to lead and guide us on the decisions to be made.

Monday, October 3, 2011

2011 Pinehurst Triathlon

This was my first Olympic distance triathlon that I have competed in. It consisted of a 1 mile swim, 30 mile bike, and a 6 mile run. I can honestly say this was one of the hardest physical and mental challenges I have accomplished so far. Even though it took 3 hours and 30 minutes, I actually enjoyed it. I did have some people ask me what the word eosinophilic stood for. It was a great opportunity to raise awareness about Jordan's disease. Who knows what next year will bring and here are a few pictures from the event.

Swim Start

Yeah.....I couldn't see the last buoy either

Coming out of the water to the first transition

My brother and I wearing the TEAM WOOD/ APFED shirts

Tuesday, September 6, 2011

Scope #6

On August 15th, Jordan had his 6th scope at Chapel Hill. Unfortunately, we once again did not get the results we had hoped for. Because Jordan’s eosinophil count was still elevated, we had to eliminate corn and wheat from his diet. As far as we know, Jordan is now allergic to dairy, soy, sunflower, beef, pork, carrots, rye, oats, squash, green beans, peas, almonds, peaches, wheat, and corn. What do you feed a four year old who is allergic to all of those?!! Jordan’s diet consists of 6 Splash (by Neocate) a day, fruit, allergy free cookies, apple juice popsicles, and some times coconut milk ice cream. God remains faithful...he especially has given Jordan an amazing personality that allows him to deal with his restrictions on a daily basis.

Jordan getting checked-in

All set!

Jordan practices putting on the mask with an anesthesiologist.

Thursday, August 18, 2011

Insurance Coverage for Formula

Parents who have children diagnosed with eosinophilic diseases go through many struggles during their life. This video is just a glimpse of one of them. Most private insurance companies refuse to cover formula like Elecare and Splash that have been scientifically proven to decrease or eliminate symptoms.

Saturday, August 13, 2011

Swim Practice for Pinehurst

I needed some open water practice for the next triathlon, so I went to Ledbetter Lake today to swim. I'm not really sure how far it was, but it seemed like 700-800 yards. I swam to the piece of land that sticks out in the middle of the picture. Evidently, there aren't many people who swim in this lake because I had some boaters ask my wife if I was ok and needed help.

Wednesday, August 3, 2011

Allergy Testing...again!

       On Tuesday, July 12th, Nana Cindy drove us back down to Greenville, SC to have a skin prick test and to have food patch testing. Jordan was pricked 50 times between his two arms. Just like his skin prick testing in Chapel Hill, no immediate allergies came up on his arms. (This is common in children with EoE because the reactions are delayed and not usually immediate reactions like an anaphylactic reaction.)

Jordan was quite upset after the prick test!

      After the skin prick testing was complete, the nurse put on 28 food patches. We came back to Rockingham and then returned to Greenville that Thursday to have them removed and read.

      Jordan had a terrible reaction to the tape that was all over his back. His whole back was bright red! He was a trooper the whole time and continued say things through his tears about the nurse like, “I know her is just doing her job” and “her is beautiful.” We returned on Friday morning to have the doctor give the final “reading” about what foods were positive. The list included dairy, soy, pork, beef, almonds, peas, green beans, carrots, squash, oats, rye, and sunflower. We have since eliminated all of these foods from his diet and have mostly relied on 6 Splash (EO28) a day and Elecare formula for his nutrition.

Tape removed


Thursday readings

     Since returning home from his appointments in Greenville, we have also noticed a reaction to fresh peaches and possibly a few more things. God has seen us through this far, and we know that he will continue to guide us through this journey.

Summer Fun

      Although Jordan has had quite a rough journey in some ways this summer, he has had several great experiences as well! Here are just a few pictures from our family summer fun!
Ocean Isle Beach Vacation
Jordan and his cousin Graysen

Having some fun!

On the way to the fireworks on July 4th.
Jordan visited the cavities!

Vacation Bible School - The Big Apple Adventure

Greenville, SC Children's Museum

"Checking out" at the children's museum

Ocean Isle Beach

Jordan loved his new net!

Before riding the Ferry over to Fort Fisher

Wednesday, June 8, 2011

New EoE Article

This was a new article published by Cincinnati Children's Hospital regarding long term outcomes for children with EoE.

Monday, June 6, 2011

2011 Woodlake Triathlon

View from the edge of the lake

Brian coming out of the water first

Transition 1

Jordan eating with Graysen. Notice the Eo28 Splash drink and K-Too chocolate cookies

Brian coming into Transition 2

Nothing like some brotherly competition

Walt finishing seconds before Brian

We only wish we won our age group...........medals were given to all who finished.