This article appeared in our local newspaper on Saturday, May 14th about the upcoming triathlon Walt is competing in. The money we raise goes directly to Apfed. Besides a few quotes being a little misquoted, it was pretty informative! Hope you enjoy!
Daily Journal Article
Sunday, May 15, 2011
National Eosinophil Awareness Week Video
This video was created to create awareness of eosinophilic disorders during National Eosinophil Awareness Week. Please take a minute to watch it! Thanks!
Sunday, May 8, 2011
Scope #4
Jordan’s scope on April 25th did not go quite as planned! After completing the scope and biopsies, the GI doctor came to talk with us in recovery. Unfortunately, she told us that his scope looked much worse than the scope he had in December when he was first diagnosed with EoE. Of course, we had to wait until Thursday afternoon to get the results of his biopsies. His highest eosinophil count in December was 65. After 13 weeks on steroids, Jordan scoped clear (no eosinophils) on January 24th. Now, by April 25th, his highest count was up to 70. To be diagnosed with EoE, the count only has to be 15. We were dreading the options...food elimination diet or back to steroids. Because the steroids caused so many problems with his cortisol level before, and it is only a temporary fix, we opted to go with the food elimination diet. Out goes all dairy and all soy! Yes, that means Jordan can no longer have his beloved Ritz Crackers, Vanilla Wafers, and M & Ms! (We are working on finding some allergy free candy for him! )
We met with a dietician at UNC on the following Friday who gave us lots of good information and really calmed our fears. However, she also felt like Jordan should avoid nuts and wheat as much as possible, along with the no dairy and no soy. We were able to find a few snack items at Whole Foods that are allergy-free and Jordan approved! While we were at Chapel Hill, the dietician very graciously gave us several cans of Elecare (special Amino Acid based formula) to sample. She also gave us some boxes of a special juice box called EO28 Splash that has lots of nutrients packed in it! Jordan will supplement his diet with the Elecare and Splash to help him get calories, protein, and fat. We are awaiting insurance approval to help cover the cost of some of the formula. It is considered “medically necessary food” for Jordan, so we are praying that the insurance will cover most of the cost.
Along with all of our family and friends, Jordan’s daycare (Sandhills Children’s Center) has been absolutely wonderful in working with us and Jordan on his new special diet. Because Jordan was really refusing to eat anything at first, they have gone over and beyond to make sure Jordan is drinking the necessary amount of his “special milk” everyday. Jordan now takes his own food to church and to other events/outings where there will be food. Talk about a lot of changes for a little 4 year old! However, Jordan never ceases to amaze us with his positive attitude. Praise God that he is such an outgoing, high energy child...even through all he has to endure. We go back to Chapel Hill for a joint appointment with the GI doctor and allergist on May 23rd to find out the next step in the game plan! Please continue to pray for our family as we strive to find out ways to best meet Jordan’s physical and emotional needs.
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| Jordan getting a little wagon ride by the anesthesiologist. (This was after a little Versed!) |
We met with a dietician at UNC on the following Friday who gave us lots of good information and really calmed our fears. However, she also felt like Jordan should avoid nuts and wheat as much as possible, along with the no dairy and no soy. We were able to find a few snack items at Whole Foods that are allergy-free and Jordan approved! While we were at Chapel Hill, the dietician very graciously gave us several cans of Elecare (special Amino Acid based formula) to sample. She also gave us some boxes of a special juice box called EO28 Splash that has lots of nutrients packed in it! Jordan will supplement his diet with the Elecare and Splash to help him get calories, protein, and fat. We are awaiting insurance approval to help cover the cost of some of the formula. It is considered “medically necessary food” for Jordan, so we are praying that the insurance will cover most of the cost.
Along with all of our family and friends, Jordan’s daycare (Sandhills Children’s Center) has been absolutely wonderful in working with us and Jordan on his new special diet. Because Jordan was really refusing to eat anything at first, they have gone over and beyond to make sure Jordan is drinking the necessary amount of his “special milk” everyday. Jordan now takes his own food to church and to other events/outings where there will be food. Talk about a lot of changes for a little 4 year old! However, Jordan never ceases to amaze us with his positive attitude. Praise God that he is such an outgoing, high energy child...even through all he has to endure. We go back to Chapel Hill for a joint appointment with the GI doctor and allergist on May 23rd to find out the next step in the game plan! Please continue to pray for our family as we strive to find out ways to best meet Jordan’s physical and emotional needs.
Friday, April 22, 2011
Triathlon shirt
Catching Up...
We have not been so good at updating the blog lately, as you can tell! We have just been really busy with normal, everyday life! To bring you up to speed, Jordan got sick several Monday mornings back. It was March 28th. He woke up throwing up whole, undigested food from the night before. He continued to throw up small amounts all through the day. We took him to the pediatrician. He was pretty convinced that it was not a virus (Jordan did not have any fever or diarrhea and he acted pretty normal for the most part.) Chapel Hill worked us in for that Wednesday afternoon. Jordan continued to throw up on Tuesday and Wednesday as well.
When we got to Chapel Hill on Wednesday, he had a stomach X-ray first. Mom and I waited with Jordan to see a GI doctor after the X-ray. After she heard what was going on, checked Jordan out, and reviewed his X-ray, she admitted him to the hospital. She was concerned that he was dehydrating and that he had an abnormally high amount of fluid in his stomach. He had a gastric emptying study performed the next day (Thursday). The study showed that he did in fact have a mild gastric emptying delay. We were later told that although it was “mild” at the time of the test, it can fluctuate up or down depending on what he eats and how much he eats. He was on a liquid diet until Friday night, when he was discharged.
Since this hospital stay, Jordan has been on a low dose antibiotic treatment that he takes 3 times a day (or before each meal) to help speed up his gastric emptying. He also has a scope scheduled for Monday, April 25th. It will be his 4th scope. Depending upon what the scope and biopsies show, we will figure out the next step. If he does have eosinophils this time, we will begin an elimination diet. Please keep us in your prayers as we all prepare for his scope.
When we got to Chapel Hill on Wednesday, he had a stomach X-ray first. Mom and I waited with Jordan to see a GI doctor after the X-ray. After she heard what was going on, checked Jordan out, and reviewed his X-ray, she admitted him to the hospital. She was concerned that he was dehydrating and that he had an abnormally high amount of fluid in his stomach. He had a gastric emptying study performed the next day (Thursday). The study showed that he did in fact have a mild gastric emptying delay. We were later told that although it was “mild” at the time of the test, it can fluctuate up or down depending on what he eats and how much he eats. He was on a liquid diet until Friday night, when he was discharged.
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| A dog came around to visit with the kids. Jordan wasn't too sure he wanted him on his bed!! |
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| Jordan never stops...even with the IV pole! |
Since this hospital stay, Jordan has been on a low dose antibiotic treatment that he takes 3 times a day (or before each meal) to help speed up his gastric emptying. He also has a scope scheduled for Monday, April 25th. It will be his 4th scope. Depending upon what the scope and biopsies show, we will figure out the next step. If he does have eosinophils this time, we will begin an elimination diet. Please keep us in your prayers as we all prepare for his scope.
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