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