21 No More

Today as I drove to WalMart it took every bit of strength I still had to reach my destination. It was all I could do to keep on that path because what I really wanted to do was turn my car around. I figured I could reach the beach by 6:30. I could reach peace, Solace. God. I know He all around and with me all the time, but the beach is the place I feel the closest to Him. I was so focused on driving to where I was supposed to go that I actually missed the turn.

Six hours and ten minutes ago I finally got the news I've been waiting for with baited breath for 2 weeks. The same news I was waiting on when I posted 21 Foods and Counting. I finally got the results for Bradley's white potato allergy test followed by the results from the biopsies taken during his endoscopy and colonoscopy. Results that rocked my world yet again.

Sometimes people think that I'm overly protective or worrisome about the foods Bradley eats. I have to be very careful and selective down to the seasonings and oils used to prepare food. As a mom I'm glad I trust what I think is going on. We first introduced white potato back in January/February. He ended up being sick several times around then. Not knowing for sure if it was true illness or a result of adding back white potato, I took it out of Bradley's diet. I was questioned as to why and where my proof was that potato was making him sick. I explained my thinking and said after he gets better we will introduce another food, then if that is tolerated we will try white potato again.

We started white potato again in June (or was it May). The signs were so subtle, easy to miss. But I was concerned so I had his allergist check his allergen levels to white potato. Thinking the results would put me at ease. Either I was just seeing things that weren't there or I was on the right track in thinking something wasn't quite right. Either way we would know.

Today the results came back and we must now go from 21 foods to even less. We know for sure that we have to take the potato out. He is definitely allergic. Highly allergic in fact. His allergy to potato is almost as high as his allergy to egg yolk.

However that wasn't the only news. I also got to read his biopsy results from his scopes. Last October 2014 his scopes were clean. Zero evidence across the board. The time before that, June 2014, counts were 10 or less. Those were the scopes since his feeding tube was placed. Prior to the feeding tube, in December 2013, the scope results showed numbers of eosinophils around 45. June 2013 scopes were the highest to date with 85 as our number. Today it took me over 2 hours to realize. Over 2 hours for it to fully hit me what I had read from the results. The count in his esophagus is OVER 100. The highest ever that we are aware of.

With this result we have to make decisions. Take all new foods away? Blood work? Both? What? You see of those 21 foods we had reached, 6 of them have been added since October. Since his last clean scope of zero. That means potentially taking away all 6 of those foods. As much as he doesn't want it, his allergist is sending me an order for blood work so we can check those other items we've added. We are prepared to back down and only be at 15 foods (remember there are about 5 of those he won't eat so really just 10 foods). Not food groups, families of food, actually individual food items.

With these results we are now in a holding pattern. We cannot add anything new until we figure out what caused the problems this time.

Those are the cold hard facts. The things that we can't change. The card we've been dealt.

As a mom I've written of my feelings on this in the past. And trust me in his short 9 years there have been many. Bradley has been through more medically than many people endure in a lifetime. I would love to say that making the decision to move to a feeding tube in the first place was the hardest to deal with. Not for me. For me I knew that although it didn't seem fair, it was going to help my sweet boy. And it has. No for me, I think the past 2 weeks have hit me the hardest. Tears that fall without warning. Anger at the unfairness of it all. And yet, here is Bradley taking the news so gracefully. His response, "Oh. Okay." Shrugged his shoulders and went right on playing. The same boy who just 2 days ago went and hid in his closest because he was mad his friend didn't come over. He even told me, "You know mom. I get mad about the little things. But not really the big ones."

Oh I don't doubt that he is disappointed, hurting, angry, etc. But for now he is accepting and I'm going to take it. This amazing young man faces most of his days with a strength and courage I can only imagine. His only question, "Hmmmm....I wonder what I can put in my lunchbox for tomorrow. And no I don't want beans."

As his mom I worry. I worry that one day he'll get mad at it all. That he'll choose a path that is harmful to himself. Afterall when you have to watch videos to start each year such as More Than Sad, you can't help but be fearful that it could happen to your child no matter what you do.

As his mom I have my own choices to make. The choice to hide my tears or let them flow freely for him to see. The choice to put it all in God's hands or try to control things by keeping them to myself. The choice to face each day stronger or hide under the covers wishing it all away. The choice to go about seeming to be cheery or let others know what our life is like including how we feel.

So many choices.

I choose to show my faithful human side. I choose to let Bradley know how I feel so that he too can learn to express his feelings. I choose to put it in God's hands because despite the frustrations and set backs, we also have the good days; the blessings. I choose to allow myself moments of hiding under the covers so that I can face each day stronger. Hiding under the covers I can cry it out, get over it, and really let go so God can take care of us. I choose to share about Bradley's life and our experiences. I may never know that impact and I don't need to, but I've been able to talk with others going through similar experiences and offer words of support, a listening ear, and so forth.

So yes, we are 21 No More. Yes I am hurting for my Boo who was devouring french fries faster than they could be made. Yes I am angry that our society revolves around FOOD, FOOD, and more FOOD and so many don't realize how good they have it. I am angry that insurance doesn't understand this disease so we have to fight for coverage (remember out of pocket for Bradley's food (formula) and medical supplies alone cost us almost what I bring home in a month.) I think the lowest of the low doctors, the ones who couldn't cut it in the real world of medicine are the ones being paid by insurance companies to help them with their denials. Yes, I wish I could go and physically force them to live on solely the foods that are safe for Bradley for a week and then to go a week drinking (not through a tube but actually drinking) his formula. I'm sure some changes would take place then.

Yes I am strong and my faith is such that I turn immediately to the Father instead of blaming Him because "I can do all things through Christ who strengthens me." (Phillipians 4:13). He has held me in his arms many a night, he is with me wherever I go. These are not just words I say to come off sounding better than others. These are words that I live by. Words I believe in wholeheartedly because I know I can't do this alone. I know and truly believe that these trials have a purpose. A purpose I may never know. A purpose Bradley may never know. In Him I take comfort, I am comforted.

For those of you who don't quite get that. Those who don't understand how that can be possible, then I invite you to start on your lifestory. I invite you to learn more about our Heavenly Father and His Son Jesus Christ. Seek out someone you feel comfortable talking to that can help you grow. Jesus told us to go forth and make disciples. So there are many out there who are willing to help you embark on this journey that will lead to the ultimate destination. A journey that will give you comfort and allow you to be able to trust in the Father and walk away from devastating news with a strength and courage that can only be found through Him.

I leave you with this. Request for all the prayer warriors to lift up their voices. "For where two or three are gathered together in My name, I am there in their midst." (Matthew 18:20). Prayers for us to hold strongly to our faith. Prayers for us to face each day with courage and strength. "Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discourage, for the Lord your God will be with you wherever you go." (Joshua 1:9). Prayers for us to accept the path that God has placed before us. The life He has planned for us. Prayers for us to continue to lift up His name and keep turning to Him in our times of praise as well as our times of need.

Life Lessons....From the Ocean

In my quest to do some finishing touches in my kitchen that is almost finished being renovated, I was determined to add some quotes around the room. Above my kitchen door seemed to be the perfect place. I wanted something that would give me hope and courage every time I walk out the door to face the world. I debated scripture, but I also wanted something that involved my place of peace, my place I feel closest to God. The beach.

I kept thinking of the quote, or at least I thought it was a quote until I couldn't find it anyplace I looked, "When life sends you a storm, ride the waves." The closest I could find was about surfing.  I then spent days searching for the perfect quote, but I kept coming back to the one about the storm and waves. After careful thought, I realized I wanted something a little more than that. Afterall, I don't face a storm in my life everyday. I began playing around with words and I finally came up with:
               "Sit upon the shore
                   Stir the ocean
                       Ride the waves"

But what does this have to do with life lessons or even my desire for something above my door to remind me how to take on each day? How does this remind me to keep God front and center?

SIT UPON THE SHORE...
There are times in life when we must sit still. When I think of sitting on the shore, I think of observing life around me. I think of quiet. Of slowing down. Of taking time to really listen. Of simply being in awe of the masterpiece stretched out before me created by our Heavenly Father. And as of late, of writing my cares and worries in the sand as a way of handing it all to God knowing that the waves will come and wash the words away just like God helps to ease our troubles, our minds, when we have the faith to let go and trust in Him. This line is my reminder that sometimes I need to keep my mouth shut, observe what is around me, listen, and to turn it all over to God.

STIR THE OCEAN...

Just like there are times in life that we must be still, there are also times when we must stir things up. We can't just be complacent and always accept things as they are. Sometimes we must fight for what we believe in. Sometimes we have to be the voice of change. And yes, even though it may be hard to do, we may have to step out on that limb and do what Jesus said. We have to "Go forth and make disciples." That may not sound like stirring the ocean, but when was the last time you shared your testimony with others, got into the really deep conversations with someone about their faith, helped them to come to know Christ? It's not as easy as it may sound. Although some people seem to do this effortlessly.

  

RIDE THE WAVES...

And then we come to to the last line. Ride the waves. This is my reminder that life is not always going to be easy. Sometimes the waters are going to be calm and the sailing will be smooth. Other times the storms will rage, the waves will crash, the current will take you under. No matter what the weather and how gentle or rough the waves are, you must learn to ride them. My favorite verse is Romans 8:28: And we know that in all things God works for the good of those who love him, who have been called according to his purpose. To ride the waves it to realize that God is going to take care of us, he has called each of us according to his purpose. When we fight against the waves we are left getting no where, exhausted, and ready to give up at times. When we learn to ride the waves, we can end up arriving at an amazing destination that we never even dreamed possible.

One final note...
We have to learn to do each of these things and know when we should sit, when we should stir, and when we should ride.

21 Foods and Counting

17 months ago (March 2014)

It's been 17 months since we took almost all food away from Bradley. That was March 2014. We allowed a small list of 10 foods, plus tea, sugar, pepper, and salt. Four months later, in July, we received great news....his esophagus and colon showed very little sign of his disease rearing its ugly head. He was healing and that also meant we got to add more food. Seven months later, in October, we got the best news ever....absolutely no eosinophils showed in his biopsies. I couldn't believe my eyes, but when his doctor confirmed it with a phone call it finally started to sink in. So yes, we got to add even more foods.

Only this time we were looking at a whole new section of the plan his dietitian came up with before we started down the road of tube feeding with a specialized formula. This time there were foods that Bradley has tested allergic to in the past. This time food introduction was going to be much slower (my preference). We didn't want any set backs since things were going so well and Bradley was making so many improvements and finally gaining weight. He was becoming your typical, energetic little boy.

So take it slow we did. So slow in fact that it took another 9 months before he had another set of scopes. We stayed safe and if anything seemed to react with him at all (even if we couldn't be sure if he just had a cold) we would avoid the food, allow time to pass, and then try something else. My concerns during that time about the possible foods to introduce were shared with Bradley's allergist and she felt the same as I did about going slow because we would be entering territory that may not be safe. There was hope to add in a meat after those October scopes. But that was one of the foods I was very unsure of introducing. 

You would think I would want to jump on getting meat added back because once that is done we can start using less of the formula. But Bradley has tested allergic to chicken, beef, and pork in the past. After some months of thinking (8 months to be exact), it hit me. Ask about seafood items...fish, shellfish, etc. Usually those are among the top food allergens, but in the past Bradley never skin tested positive for them. So the allergist and I discussed the idea and we went for it. Bradley was skin tested and had bloodwork done to check for an allergy to seafood and chicken. Fingers crossed. If the results came back fine and his scopes were still clean, then we would slowly get to add something from the list. 

Today we got the results back on most of the foods we tested. Results that we weren't quite expecting. He is least allergic to fish on the list of items we tested for and still very highly allergic to milk and egg. But even with low numbers for some of the items, an allergy is an allergy. He won't be able to have those items. Kinda makes me wish we had tested beef and pork just to see. 

So I sit here today. Crying every once in a while because no matter how much you prepare for results you don't want. Sometimes the results just hit wrong and you can't help but feel a little defeated. We are still waiting on the results of his scopes from last Thursday. Praying the news isn't another blow, but prepared in case it is. If eosinophils are present, then we will have to take foods away again. It will be guess work. If they are not present and we get a zero count like we did last October, then we will get to figure out another food to introduce. 

We are so thankful that he can have all he is allowed to have. There are so many with Eosinophilic Esophagitis who have no safe foods or less than a handful of safe foods. So right now we sit at 21 foods, tea, and some seasonings. Of those 21 there are several he won't even eat. Also, the foods cannot be prepared the way you typically would prepare them. Only with the seasonings and oils I list.

**Eosinophilic esophagitis (EoE) is an allergic inflammatory disease. Eosinophils are a type of white blood cell and they shouldn't be in the esophagus. Bradley has them there and in the colon. Basically, Bradley's own body attacks itself, it sees food as a foreign invader that should not be there. This attack causes many troublesome symptoms as well as damage to the esophagus and colon in Bradley. His feeding tube and taking away foods has allowed his body to heal. 

Bradley's Food List as of August 2015

• Lettuce**
• Broccoli**
• Green Beans**
• Squash**
• Carrots**
• Sweet Potato
• Pear
• Plum
• Apricot
• Peach
• Blueberries
• Strawberries
• Black beans
• Black Eyed Peas
• Pinto Beans

**Indicates foods he won't eat.

Items that may or may not stay on the list

• Rice
• White potato
• Watermelon
• Cocoa
• Flax seed
• Oats

Drinks, seasonings, and oils

• Tea
• Sugar
• Brown sugar
• Salt
• Pepper
• Garlic
• Olive oil
• Cinnamon flavoring oil
• Peppermint flavoring oil