 |
| Enjoy Life cookies and candy bar |
 |
| Jordan's main "food"...he needs 6 Splash daily |
 |
| Most fruits, sweet potatoes, and cucumbers |
Monday, March 5, 2012
Jordan's Current Diet
One of the most frequently asked questions seems to be, "what can Jordan eat?" Here are some pictures of the foods Jordan can eat. We didn't take a picture of his rice milk or the coconut milk ice-cream he can eat...only the things he eats daily. Occasionally, he gets Dum-Dum suckers or Smarties candy. Amazingly, Jordan has adapted to his diet much easier than anyone could ever believe.
Thursday, March 1, 2012
Rare Disease Day
February 29th was recognized as Rare Disease Day 2012. http://www.rarediseaseday.org/
Eosinophilic Esophagitis is classified as rare due to the low prevalence, high level of complexity, and chronic debilitating nature of this disease. FOX Carolina based out of Greenville, SC made a video on a 6 year old boy named Giles Martin Schanen in honor of Rare Disease Day. Dr. Markowitz ( Jordan's pediatric GI doctor) is discussing EoE in the video link below.
FOX-Carolina EoE video
Eosinophilic Esophagitis is classified as rare due to the low prevalence, high level of complexity, and chronic debilitating nature of this disease. FOX Carolina based out of Greenville, SC made a video on a 6 year old boy named Giles Martin Schanen in honor of Rare Disease Day. Dr. Markowitz ( Jordan's pediatric GI doctor) is discussing EoE in the video link below.
FOX-Carolina EoE video
Wednesday, February 22, 2012
Donations to APFED
This year we wanted to be more specific on where donations to APFED in honor of Jordan are being used. We have decided that all donations will be used for the Hope on the Horizon research fund. 100% of the money will go directly to eosinophil related research. Here is a list of past grant recipients and their research projects.
http://apfed.org/drupal/drupal/past_grant_recipients
Check out the video from the APFED website titled "Life Without Food"
http://apfed.org/video1/video1.htm
Tuesday, January 3, 2012
Tri for EoE
We were able to purchase two new items over Christmas to raise education and awareness for eosinophilic esophagitis. The car magnet was purchased from http://www.amazon.com/ and Walt created the sticker from http://www.makestickers.com/
Hopefully in the future there will be more triathletes joining Tri for EoE to continue raising funds for research.
Hopefully in the future there will be more triathletes joining Tri for EoE to continue raising funds for research.
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.”
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.”
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