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Thursday, January 22, 2015

Life Without Food...Revisited and Updated

It's been a year since the decision was made for Bradley to be put on a feeding tube for majority of his nutritional needs. I've posted off and on about our journey, but feel it is time to do an update. Feeding Tube Awareness week is coming up soon: February 8-14 as well as Rare Disease Day: February 28.

Here is where we were one year ago on January 21, 2014: Life Without Food

As we neared surgery to have the feeding tube placed, Bradley's health continued to decline. Here is a post from February 24, 2014 Rest

A few days later, a discussion about being a special needs child came up. Mommy, Am I Special Needs?

Then realizations start to hit as you realize other parts of life that will change. The Little Things and The Moments Sneak Up on You

It has now been a little over 10 months since the tube was placed and what an amazing journey it has been. At the end of this post is a slideshow of pictures and I still stare in awe at the change. I knew my baby was sick a year ago and we had to do more than what we were doing, but to see the picture evidence speaks volumes.

Once the tube was placed Bradley was only allowed the following foods: lettuce, green beans, carrots, squash, sweet potatoes, pears, plums, apricots, and peaches. All of these foods plain or with only salt/pepper. And we threw in some sweet tea. Needless to say there are lots of adults who don't like those foods, let alone an 8 year old boy. Thankfully we were able to find pure forms of juice made from the fruits he could have, so we froze them as popsicles. We also found a few sweet potato chips that were safe. You never realize just how many "extra" ingredients are in the things we consume until you have to really pay attention.

With the formula he wasn't improving a lot at first, but once we figured out the correct amount of calories and servings to keep him full, he began making the gains we were hoping to see. June brought on a new set of scopes....for the first time ever, his biopsy counts were in the teens. We got to add more foods to his diet. Still not enough to abandon his formula, but we were heading in the right direction.

We added beans (black beans, black eyed peas, kidney beans, pinto beans). Again, all cooked plain, basically with water and salt. But this opened up new doors as we found chips made from beans that were safe as well.

Once those were seeming to do okay, we got to add in berries (strawberries, blueberries, and cherries).

The next scopes weren't scheduled until December...it was going to be a LONG wait. But one day out of the blue we got a call asking if we could have Bradley down for scopes in two weeks. So the week before Halloween, I took off to MUSC with him for his next scopes. I anxiously waited for the results the next week. They came up on the health chart online before his doctor called, but there wasn't an ananlysis so I thought maybe I was reading the results wrong. Surely those zeros meant something else. WRONG....those zeros meant exactly what we were praying for. No eosinophils were present in his esophagus or his colon. Praise GOD! Taking away almost all foods and allowing his sole source of nutrition be an elemental formula was working!!!! New foods are on the way.

The great news: Bradley's body is healing, more foods can be added (one at a time, very slowly), he is getting a chance to be a "normal" boy, he has energy, and so on. The scary news: we were entering the territory that includes foods he has tested positive to in the past. A slow process of adding foods back just go slower. But we are in this for the long haul and are excited for the results.

So we added in rice. Talk about opening up a world of possibilities. With rice there is rice milk, plain rice cakes, rice chips, rice cereal, etc. New items on the menu include: smoothies made with ingredients safe to him, homemade rice milk ice cream, and so much more.

Bradley still has a long way to go. Elemental formula remains his primary source of nutrition. Since his eczema still isn't under control, he started being treated with methotrexate. This treatment requires routine bloodwork that he doesn't look forward to. And he remains on multiple medications for allergies, eczema, asthma, and Eosinophilic Esophagitis.

On the parenting side of things, we battle insurance every few months because even though he is meeting the goals of gaining weight and having lower counts on his biopsies, these are results of being treated correctly. He needs to continue the treatment for it to continue to work. We remain in a constant routine of feedings every 3-4 hours. We focus on the positives because if we look at the negatives, it becomes overwhelming.

His sisters for the most part are really involved with him as well. His youngest sister, Aubrey, is 2 and she knows all about how to feed bubby through his tube. His other sister, Tori, is 6 and accepts it all but also fights the feelings of frustration that come along with feeling that it just isn't fair that he has to eat this way.

I just want to raise more awareness of both the disease and the fact that feeding tubes don't have to be some foreign thing that should be done away from others.

Meet Bradley:



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