Video/Tri for EoE

    On Saturday, October 20th, Walt and his brother Brian will be competing in the Beach2Battleship Half-Ironman Triathlon in Wilmington, NC. ( http://beach2battleship.com ) They will swim 1.2 miles, bike 56 miles, and run 13.1 miles. A great family from our church (thanks Faurot family) created a video about Jordan and EoE in order to help raise money for Apfed's Hope on the Horizon Grant (http://apfed.org/drupal/drupal/index.php). All of the money donated will go straight to eosinophil related research. You can click on the "Donate to Apfed in Honor of Jordan" tab on the right in order to link straight to Apfed's donation webpage. Please support Walt, Brian, our family, and so many people who are suffering from Eosinophil related diseases by donating to Apfed.
    We hope you will watch our video to learn more about Jordan's life with EoE. For the first few years of his life, Jordan stayed sick and underwent numerous tests and hospital visits before being diagnosed in December 2010. Please watch our video and consider donating to Apfed in his honor. Thanks!

 

Scope #9

    Back in June, Jordan began food trialing turkey. After eating it for a short period of time, it became evident that Jordan was "failing" turkey. He became very sick, started to wake up crying, and had food refluxing back up into his mouth. Upon visiting his GI, we decided to pull turkey, cancel his scope, wait a few weeks, and start food trialing white potato. Jordan started eating  white potato around the end of July/beginning of August. Although he was not too fond of a plain baked potato, he has since fallen in love with Cape Cod chips that are made from just potatoes and oil. We had mixed feelings about how the potato trial was going because Jordan began to complain off and on about stomach pains. We also saw a decrease in how much Splash he was drinking. However, we didn't feel as though the symptoms were near as severe as they were with turkey, so we pressed on another few weeks.
      On September 12th, Randi, her Mom, Jordan, and Nathan all traveled to Greenville, SC to see Dr. Markowitz. We spent the night at the Ronald McDonald House once again. Who wouldn't love this playroom at Ronald McDonald?!!

         Jordan's scope was the next morning (Sept. 13th). Although the visuals looked good, we had to wait for the biopsy results. Dr. M. thought his esophagus looked pretty "normal" but he did see a suspicious spot in his stomach that was biopsied. The next week, we found out that Jordan passed white potato!! Praise the Lord!! At the same time, we found out that Jordan was positive for H-pylori. The H-pylori bacteria caused him to have gastritis, which explained his stomach pains and lack of eating. Jordan had to be treated with double antibiotics for 10 days in hopes to kill off the H-pylori.We had to wait at least 2 weeks before starting a new food trial to ensure the gastritis was healed.

Jordan and his biggest fan, his baby brother Nathan

Sleeping good!

         Our next food trial, at Jordan's request, is carrots! We will update soon on his progress! 
   

Where have we been?!!

       Since we have taken a short vacation from the blogging world, we thought we would update you on what we have been doing through pictures!! Here are some pics from the last few months!!



In June.....We had an awesome family vacation to Dollywood!! We also went swimming, had lots of "brother time," Jordan graduated from Preschool, we had the boys pictures made together, and much more!

 

In July and August....We spent time at Holden Beach with family, went to the Fireworks, Jordan started Kindergarten, and we spent lots more "brother time!" 

 

 In September....We started playing soccer, went the zoo with Church, watched Walt and Brian compete at the White Lake Triathlon, and continued to enjoy Kindergarten each day!

    

 We are staying busy with 2 active boys!!

Nathan Miller Wood is born!

Being that he is now 5 months old, we thought it was only fitting to announce that Jordan now has a baby brother, Nathan! Nathan was born on April 22 at Moore Regional Hospital. He was 8 pounds, 15 ounces!! Unfortunately, Nathan was hospitalized in the NICU for 7 days due to Aspiration Pneumonia. He was such a trooper (and continues to be) during his stay! Jordan is such an awesome big brother! He loves Nathan, and Nathan loves Jordan just as much!!

   

  
      The million dollar question...will Nathan, or does Nathan, have EoE?? Our answer....we are praying not! Nathan did have lots of trouble the first few weeks of life as far as drinking was concerned. We switched from breastmilk and Enfamil to Good Start to Alimentum to Nutramigen to Elecare!! He also takes Prevacid 2 times a day and Reglan 4 times a day. Our current “thought” is that Nathan has a milk and soy protein allergy. Once we start introducing foods to Nathan, we will know more!
    God truly blessed our family in the fact that Randi was able to take a year off of work to stay home with Nathan and Jordan (half-day anyway). Our family of four is complete!

Rock the Cure

  The 1st annual Rock the Cure event was held on April 14, 2012 in Rockingham, NC. This event was created to help raise awareness and monetary support for Dravet Syndrome and Eosinophilic Esophagitis. Our family was honored that Jordan was chosen to be a part of this. In addition to everyone who helped and supported the event, we would like to give a huge thanks to Scotty Mabe, Glenwood United Methodist Church, fellowServant, Bob Nelson, Fortress, Freedom Praise, Ignite, 1st Assembly, The Christian Closet, L&M Bounce House rentals and JR Cottle from Andy's!! Without tons of community support, this event would not have been possible. Here are a few pictures from the event.

Jordan at the EoE table

Jack and Jordan

Dad and Jordan playing "Where I Belong" by Building 429

New EoE Article

This was a recent article from The Journal of Allergy and Clinical Immunology. In a brief overview, it compared the effectiveness of the elemental diet, 6-food elimination diet, and skin prick and atopy patch–directed elimination diet. Ninety-eight of 513 patients met the eligibility criteria.Of these 98 patients, 50% (n= 49), 27% (n= 26), and 23% (n= 23) received elemental, 6-food elimination, and directed diets, respectively. Remission occurred in 96%, 81%, and 65% of patients on elemental, 6-food elimination, and directed diets, respectively. The odds of post-diet remission versus non-remission were 5.6-fold higher (P= .05) on elemental versus 6-food elimination diets and 12.5-fold higher (P= .003) on elemental versus directed diets and were not significantly different.


Here is the link for the full text article:     EoE article

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.

Enjoy Life cookies and candy bar

Jordan's main "food"...he needs 6 Splash daily

Most fruits, sweet potatoes, and cucumbers

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

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

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.