With EoE, Allergies, Asthma and a G-Tube

CURED 2017

A few short months ago Ellyn Kodroff, CEO of CURED, asked Nathan and I to speak at the upcoming conference in October. We had no plans to go, but something told me I was going to do this.

So Nathan and I went back and forth on making it happen. I had planned to take the kids to Ohio the weekend before to visit family then Nathan would join us in Cincinnati for the conference. Then everything got changed around and it ended up that I would be the only one going. Once I accepted this change, I happily embraced the fact I would have approximately 48 hours kid free.

I watched some of the previous speeches that parents had given at the conferences years before. Nothing was really coming to mind of how I wanted to present our story to a group of doctors, researchers, patients and parents. As the end of September quickly crept up I knew I needed to get busy, Ellyn wanted a copy of my speech as the October calendar rolled over. So one evening I sat down and just went to it. The speech just flowed out and by the time I was done I had 5 pages of what I wanted to share.

There was a problem though, I was only given a 15 minute time slot so I had to trim down this 25 minute long story. That part may have actually been harder than figuring out what to write. Then I had to add a slide show. Once I remembered how to use Power Point, the perfect pictures came to mind so plugging them in was no problem.

Writing the story ended up being no problem, practicing it deemed to be a problem. I could not make it through with out coming to tears. Okay, sobbing. I finally worked up the courage to read it to Nathan. We were both a mess. Day to day I’m really fine. I don’t really ever cry. Once I had our whole story laid out in front of me, all smooshed together in one bucket, it was very hard to face. I’m not sure if it’s the disease and everything the kids have faced. It could be all the crying I have suppressed over the years. I don’t know. Just a few days before the conference I decided to read it to the kids. What was I thinking?! I didn’t read it all because some of it would have been too much for them. What I did read though brought Charlie to tears. He asked me if that’s what it was really like going through all of it. So maybe it’s just that our story is sad.

So off I went to Ohio. I could write a whole blog post on my first time ever renting a car. I’ll save you the details and let you imagine how that went. 20171023_001320.jpg

I made it through Thursday listening to doctors presenting. I noticed that a few did seem a bit nervous. Why not? They’re human too. Though, it really didn’t help me relax any. Friday morning arrived. I was up at 5:30, 4 hours and 15 minutes until I had to speak. I arrived at the conference and found a seat, then a muffin and coffee. I ate a few bites noticing my mouth was already dry as the desert. I decided to get up and head out to meet some people. Maybe that would loosen me up a bit and make me forget about having to present. I met a few moms that I knew only through facebook. It was so exciting. It’s sort of like meeting a celebrity.

I made my way back in to sit down to try and force my breakfast down. As more people came in someone placed their belongings in the seat in front of me. That someone was The Dr Marc Rothenberg, one of the world’s foremost authorities on eosinophilic disorders. Yep, breakfast was over.

As the morning started and the first speaker was announced I was focusing on my breathing. I kept trying to relax. I kept reminding myself how important it was for me to share our story with a sold out room filled with doctors, researchers, pharma, patients and parents. I believe there were 200 people there. 20171022_233920.jpgI recently came across this scripture, it came at just the right time. I saved it as the screen saver on my phone. I think I read it a thousand times that morning before my speech. Maybe this scripture is meant for something much larger, but it definitely helped me that day.

As each speech ended and the time grew closer I really thought my heart was going to jump right out of my chest. I’m pretty certain the guy sitting beside me must have thought I was crazy as I kept taking huge deep breaths trying to calm down. Before I knew it, it was my time to shine. I already had tears in my eyes, my emotions were so high.

I made my way up on the stage, asked the lady who introduced me how to work the clicker for my power point, she showed me then left me to present.

As I opened my mouth the tears started coming. I took another deep breath, and said “Phew! Let’s switch gears for a moment as I share a patients side of things.” Then I went right into it. After thanking all the doctors for coming to share and wanting to learn I thought I was going down. I don’t know how I pulled it together, but I did. I could hear myself talking, I wasn’t rushing and I had magically memorized my speech. I was able to look at the crowd that I had feared and shared my family’s journey with every ounce of my heart. As I clicked through the power point I would glimpse at the pictures on the small screen in front of me and every one reminded me why I was doing this.

When I finally made it to the end I was crying. Getting those last few sentences out was the toughest. But, I did it. All I can remember is that I said thank you. Picking my papers up off the podium is a picture that is burned in my head. I didn’t wait for questions from the audience. I walked off the stage and gave Ellyn the biggest hug. I felt SO good knowing I did it. What I didn’t notice though was that everyone in that room was giving me a standing ovation. WOW! How did I do that with our story? I’ve also been told there wasn’t a dry eye in the room. 20171023_001346.png

So many people approached me and thanked me for sharing afterwards. A few speakers that followed even mentioned me. It was amazing. I have never felt so accomplished. I know I did the right thing by accepting Ellyn’s invitation. I had opened the eyes of the medical professionals. I let them see just a glimpse of life in a family with EoE. I hope I lit a little fire under them.

There was one gentleman, who I didn’t get his name. He approached me and thanked me for sharing. He then told me I am an amazing woman. To handle what my family has gone through and is going through I must be able to handle anything. He told me I am very strong and that I am a super mom.  It was like what all of you, my cheering section, has always told me. You know what? It felt good to hear it again after giving that emotional speech. Like maybe now I accept that title.

Thank you to all of my supporters who cheered me on! This was definitely an experience that isn’t over. I feel it maybe the start of something new.

Stay tuned. I am going to share more on the conference!


October 23, 2017 Posted by | Charlie's allergies, daily life, Gage's allergies, LIVING, Nathan's allergies, Tinleigh's allergies | , , , , , , , , , | 4 Comments

Hidden Chicken

When we make the boys pizza I like to cut up tiny pieces of chicken and hide it in the sauce under the cheese. That way they’re getting protein and we don’t have to argue about it. Gage can now eat Bob’s Red Mill all-purpose  flour since adding potatoes to his diet. We made his pizza crust using that as the main flour for the fist time. When Nathan took the pizza out of the oven I asked him if the crust was gooey, using egg replacer it typically is. Next thing I know Nathan cuts off a small piece and shoves  it in his mouth! I about had a heart attack and yelled what are you doing?!  He looked at me puzzled then realized what he had done. He makes a mad dash for the sink and spits it out. Luckily he only had the crust and not a piece with chicken. Chicken trauma averted.

January 20, 2012 Posted by | Nathan's allergies, What's for dinner | , , , | Leave a comment

Polish Kraut and Apples – slow cooker

Made a super easy dinner for Nathan. I love slow cookers!

Polish Kraut and Apples

1 can (14oz sauerkraut)

1 package (16oz) smoked polish sausage, cut into chunks. I used a beef sausage.

3 medium tart apples, peeled and cut into eighths

1/2 cup packed brown sugar

1/2 tsp caraway seeds, optional

1/8 teaspoon pepper

3/4 cup apple juice

I was only making this for Nathan so I cut everything in half.

Place the sauerkraut in an ungreased slow cooker. Top with meat, apples, brown sugar, caraway seeds if desired and pepper. Top with remaining sauerkraut.Then pour the apple juice over all. Cover and cook on low for 4-5 hours or until apples are tender.

Nathan thought it was wonderful. He said I could put it on the menu again.

August 29, 2011 Posted by | LIVING, Nathan's allergies, What's for dinner | , , , , , , , , , , , | Leave a comment

Grilling for a Benefit

Nathan was asked to be the grill man at a cancer benefit. He agreed since he loves to grill. Although, a little disappointed once he found out he was only grilling hot dogs, he still did it. So as the grilling began I chased the boys everywhere while they played. We made our way back over to Nathan and I noticed he was taking ice from the cooler and sort of washing his hands and arms. At first I just thought he was cleaning himself off. Then I thought “Oh no, did he burn himself?” So I went over and asked what he was doing. Poor guy had hives up and down his arms and hands. Turns out the hot dogs had chicken in them. I had never seen him react like this before. He had cooked chicken on the grill for the boys and myself and never had a reaction. So he basically took a step back and let the other two guys handle the dogs until it was over. I wonder what will happen next time he does chicken for us.

A few side notes while at the benefit:

Charlie asked if he could go request the Christian band to play Luke Bryan’s “Rain is a Good Thing”

Charlie was later blown up by a storm trooper. He was so excited.

The benefit was for  – a children’s book inspired by McKenzie Brownlee—-Its a celebration and memory of a courageous little girl who fought a STRONG battle with cancer. All author’s profits go to the McKenzie’s Smile Foundation. Purchase one today to donate to her foundation!

Two other authors were showcased at the benefit as well.      and

August 25, 2011 Posted by | LIVING, Nathan's allergies | , , , , , , , , , | Leave a comment

Strawberry pie divided by 3 with allergies

For Nathan’s birthday I had a small panic attack. Gage can’t eat any kind of cake. (Come on you allergy friendly product developers! We need wheat free, egg free, rice free, potato free, pea free and oat free cake mix. A bread would be nice as well.) So I had to think of a different dessert for us to eat. What is a great summer time pie – STRAWBERRY PIE! I went to work.

I had a corn-based pie crust in the freezer for Gage.

I baked the large crust and let it cool.

While the crusts were thawing and cooling I worked on the filling.

Sliced up the strawberries.

Dumped the strawberries in the crust.

Mixed up the jello, water and sugar.

Poured the sauce over the strawberries.

Mom told me later I should have let the sauce cool before pouring it over the berries. It still turned out perfect. I placed the pies in the refrigerator immediately to let them set up.

We sang happy birthday and dug in!

Within the first few bites Gage informed me I was his “best bud”. To be Gage’s best bud is quite the honor. He only gives that title to a very elite group of people. I was so excited to have finally joined this group.

August 15, 2011 Posted by | Gage's allergies, LIVING, Nathan's allergies, What's for dinner | , , , , , , , , , | Leave a comment

Stuffed peppers, never again

I thought it would be an easy quick make dinner to do stuffed peppers. Boy was I wrong.

I had some leftover stuffing mix in the freezer from the last time I made the boys stuffed peppers. However, I had put pasta letters in the mix that Gage can’t eat anymore. So I thought I would just use his quinoa. I found I was also out of rice so I would make the peppers for Nathan and I with the quinoa as well. It’s healthier anyways. As I’m getting started with everything I realize I have no meat for Gage. UGH. He can’t have the beef I’m using in ours. I guess I was thinking I would use the turkey from the frozen mixture for Charlie, but it has the pasta in it. So I run and search the deep freezer. Luckily there was some ground pork in there. Now set with everything I realized my simple little meal wasn’t so simple. I had to soak and boil the quinoa. Boil the peppers. Thaw the mixture for Charlie I had forgotten to set out. Thaw the ground pork for Gage’s pepper. Mix the sauce mixture then split between Gage’s mixture and ours. Keep all spoons separate so I didn’t cross contaminate. Find three different dishes to cook them in. I cut the boys pepper in half the wrong way. Had to figure out how to salvage it. Looking at my very full sink of dishes I realized this meal was quite the ordeal!

Fifty minutes later out came the peppers. Since Charlie thinks its cool to eat different cuisines now I convinced him this was from Spain. First place that popped into my head. I don’t really know where stuffed peppers originate from. He immediately tasted the yellow pepper. Not so good, but he did gobble up the filling. Gage loved the whole thing.

I was so excited!

No one had a reaction, I must have kept everything straight!

Darn, forgot to snap a picture of how pretty they were.

July 7, 2011 Posted by | Charlie's allergies, Gage's allergies, Nathan's allergies, What's for dinner | , , , , , , , , | Leave a comment

NEAW – eat like us for a day!

It’s eat like us for a day! Just try to, I dare you!

Pick one person or try to avoid all the foods.

Gage: Beef, eggs, soy, rice, all seafood, all nuts, peas, all potatoes, mustard, celery, and sesame (he has the easiest list)

Charlie: Beef, eggs, soy, rice, sesame, all seafood, all nuts, all melon, mustard, pea, pineapple, green beans, all beans, celery.

Nathan: Chicken, eggs, hops, fish, all nuts, all melon, turkey, pineapple, milk clams, oranges, apples, bananas, mushroom, peaches, pears.

OK good luck. Let me know what you come up with! I can always use new ideas.

May 20, 2011 Posted by | Charlie's allergies, daily life, Gage's allergies, Nathan's allergies | , , | 1 Comment

It’s airborne

I couldn’t sleep last night and started thinking about what the doctor had said that maybe Charlie’s EE is caused by an aeroallergen. I think he might just be right. Charlie started this cough/clearing of the throat thing over the last few months. It was this exact time last year that he started having problems and was diagnosed! Then I started thinking about Nathan. When I first met Nathan he would say that he was deathly allergic to poultry and fish and that he could only eat pork as long as his seasonal allergies weren’t bothering him. DING!  It has to be more airborne related for my family. I can’t wait to find out the results of this new blood test and get the scope results back. If we know that Charlie is going to flare up only during a certain time of the year we could treat it a little stronger and maybe keep it under control. Wouldn’t that be awesome!

May 19, 2011 Posted by | Charlie's allergies, Nathan's allergies | , , , , , | Leave a comment

Things are looking up!

Since all three getting scope the beginning of Dec things are looking up!

Charlie: His biopsy came back a ZERO! Charlie got to add chicken, turkey and onion back in his diet.

Gage: He looked a little swollen but his biopsy came back a ZERO! Gage gets to add back a new food once a week starting with the least allergic. We’ll stop at the higher positive ones.

Both boys also reduced their meds to once a day at bedtime.

Nathan: He looked about 30%-40% better. His biopsy numbers dropped from 50-55 to 30 and 40. He hasn’t been taking his meds like he should and he sneaks in some foods he shouldn’t have. We’re happy with the improvement. He can swallow a tiny pill now with out chewing it up. It’s hard not to sneak in foods when you’re allergic to so many. He is going to try harder this next 6 months so he can see how good it feels to be normal! He said he feels normal now but he has ways to go to understand how “real” normal feels.

I am so grateful for our wonderful doctors and not making us suffer through a total elimination diet. They have definitely made dealing with this disease livable. It is still very hard at times to tell my kids they can’t have something specific to eat but it sure beats handing them a liquid drink and saying here’s dinner!

We’re even to the point that we can eat at Wendy’s! (with careful ordering) First time we’ve eaten out in the last 6 months.

January 7, 2011 Posted by | Charlie's allergies, Gage's allergies, Nathan's allergies | 3 Comments

Pork, Hold the Fruit

We eat pork usually every night of the week. (I have always hated pork) This is the only meat aside from lobster, crab and shrimp that Nathan isn’t allergic to. Who can afford shellfish every night of the week? (Oprah – can you hook us up?) My latest “help” is to check out cookbooks from the library and just go through them page by page to find recipes.

When making many different pork dishes a few repeating ingredients are pineapple, apples, and oranges. I have actually started yelling at the cookbooks. Nathan is allergic to all fruit. This has become a never-ending battle for me. I can feel the tears start to well up every time I see “add one cup apple juice” or “add one can crushed pineapple”. There’s no getting around it. I know it’s not really about me, it’s about finding safe things for my husband to eat. However, this love affair between fruit and pork is really starting to upset me.

Dear Pork and Fruit,

Next time I see the two of you together I will throw my beer at you! 



October 26, 2010 Posted by | Nathan's allergies | , , , , , , | 1 Comment


%d bloggers like this: