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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:



Monday, January 12, 2015

Here I Go Again.

·        Here I go again...stepping out into the unknown, getting out of my comfort zone. Or am I? Afterall, I teach everyday. I work with other adults and facilitate learning everyday. But this, this is different. Since I got that email a little over a year ago to become part of the i-reach team which basically is a team focused on Evangelism, I have been stepping into unknown territory or at least somewhat uncomfortable territory. 

You see I like to know exactly what I'm doing, when I'm doing it. I like there to be a plan and I like to know as much as I possibly can. But when it comes to evangelism and discipleship, I am not as well versed. But God has plans for me and has placed me on a path that I am walking down blindly. You know what though? He is right there with me the entire way. When I stepped out and up a few months ago and led a small group study on telling your story, there were nights when I had well versed plans for the evening and we didn't do not one thing in the plan. There were other nights when I had no plan until right at that moment and it turned out to be exactly what God needed it to be. Kind of reminds me of the reason why TobyMac wrote the song Steal my Show. You see I am walking blindly into areas I've never known, but God has this. He's right there with me as long as I rely on Him to "steal my show". 

     So what did I get myself into? While sitting at church council meeting a gentleman mentioned something about needing teachers for new classes and then specifically hinted to me using my name. After some prayer and knowing that not only am I part of the church's new evangelism team, but the chairperson, I sent in a description for a group to learn about evangelism and discipleship. Two very scary words to Christians, right? 

     Yes, but they are so important if we are to be true followers of Christ. 
   
Jesus not only called each and everyone one of us to follow Him, but he also charged us with going out to make disciples of all nations. 
   
He didn't say, "Okay, everyone who is a pastor, here is your job. Now everyone else, just sit back and just believe in me." 
  
      No, He expects everyday people like you and me to go out and spread the good news, share our stories, and lead others to Him. He expects us to continue to grow in our own faith.

But what does all that really mean? Where do I start? What if people laugh at me? Reject me? Quit liking me? Judge me? Ask me questions I don't have answers to?

     I don't have all the answers to the questions. I don't even have all the questions, but here is what I do know: 
  •      It means, you can't just accept Christ as your Savior and repent of your sins, you've got to do something.
  •      You must start somewhere (and I'm going to try to help)
  •      And all those other questions have a theme....a central word: ME. Guess what! It's not about ME. Me is selfish and we are not called to be selfish and only look out for ourselves. Instead we must realize it is expected of us to share the love of Jesus Christ with everyone. We are expected to plant the seeds of his word, his works. You have to ask yourself how much you have to hate someone to not share about Jesus. Think of it this way, if you are driving down the road and go around a curve where a tree had just fallen. Would you stop your car and warn the drivers coming from the other direction before their car goes crashing into that tree or flying over the cliff to avoid the tree or do you just stand there and watch as the cars drive towards imminent doom?
      So here I am, once again diving in because that is apparently what I'm getting good at. And while I won't post nightly like I did for telling your story, I will post regularly to get you thinking. Some of this will come from the UMC Director of Evangelism Ministries: Rev. Heather Heinzman Lear. Others will come from various readings and workshops I attend and still others may grow out of questions that are raised in small group studies. 
     
      I hope you will join me as I begin yet another journey in my life story.

      Let's get started by asking ourselves a few questions: 
  •    When people ask you to tell them about yourself, what’s the first thing you usually share?
  • What are the things that most define you: your family, locale, education, career, possessions?
  •  Where you place “Child of God” on that list?
  •  Are there priorities in your life that keep you from claiming the primary identity given to you at baptism?
  •   What are you so busy “storing up” that you lose focus on God?
     For me, it depends on where I am, who I'm with. When I talk about myself I usually mention my job and my family. Rarely do I mention that I'm a Christian or share where I attend church. My life centers on my family, career, and church, but my conversations with others don't always reflect that. As for "Child of God", it is so easy to place that first on my list in my head and even on bio pages for things like Twitter, but in conversation, it doesn't typically come up. So I must ask myself, why is that? How can I change that?

     So what am I so busy "storing up"? What causes me to lose my focus on God? Work. Family to a small degree, but mostly work. It is so easy to lose focus on God while working because I get so frustrated about things I can't change, things I can't control, things that simply are not fair, and on and on and on. This is an area that I know needs the most work because I can lose my focus quickest there. 

      The great thing though is that we have this AWESOME God who is there with us every step of the way. You might ask how I know this? I know this because He has been there throughout my lifestory. I can find very specific times in my life where He is right there and because of my faith, I know that He is even there when I can't "see" him. My faith also gives me the strength to keep stepping out onto the unknown path to follow God where He is leading. 

      Check out what is says about faith in Hebrews 11: 
Faith in ActionNow faith is confidence in what we hope for and assurance about what we do not see. This is what the ancients were commended for.
By faith we understand that the universe was formed at God’s command, so that what is seen was not made out of what was visible.By faith Abel brought God a better offering than Cain did. By faith he was commended as righteous, when God spoke well of his offerings. And by faith Abel still speaks, even though he is dead.By faith Enoch was taken from this life, so that he did not experience death: “He could not be found, because God had taken him away.”[a] For before he was taken, he was commended as one who pleased God. And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him.By faith Noah, when warned about things not yet seen, in holy fear built an ark to save his family. By his faith he condemned the world and became heir of the righteousness that is in keeping with faith.By faith Abraham, when called to go to a place he would later receive as his inheritance, obeyed and went, even though he did not know where he was going. By faith he made his home in the promised land like a stranger in a foreign country; he lived in tents, as did Isaac and Jacob, who were heirs with him of the same promise. 10 For he was looking forward to the city with foundations, whose architect and builder is God. 11 And by faith even Sarah, who was past childbearing age, was enabled to bear children because she[b]considered him faithful who had made the promise. 12 And so from this one man, and he as good as dead, came descendants as numerous as the stars in the sky and as countless as the sand on the seashore.
13 All these people were still living by faith when they died. They did not receive the things promised; they only saw them and welcomed them from a distance,admitting that they were foreigners and strangers on earth. 14 People who say such things show that they are looking for a country of their own. 15 If they had been thinking of the country they had left, they would have had opportunity to return. 16 Instead, they were longing for a better country—a heavenly one.Therefore God is not ashamed to be called their God, for he has prepared a cityfor them.17 By faith Abraham, when God tested him, offered Isaac as a sacrifice. He who had embraced the promises was about to sacrifice his one and only son, 18 even though God had said to him, “It is through Isaac that your offspring will be reckoned.”[c] 19 Abraham reasoned that God could even raise the dead, and so in a manner of speaking he did receive Isaac back from death.20 By faith Isaac blessed Jacob and Esau in regard to their future.21 By faith Jacob, when he was dying, blessed each of Joseph’s sons, and worshiped as he leaned on the top of his staff.22 By faith Joseph, when his end was near, spoke about the exodus of the Israelites from Egypt and gave instructions concerning the burial of his bones.23 By faith Moses’ parents hid him for three months after he was born, because they saw he was no ordinary child, and they were not afraid of the king’s edict.24 By faith Moses, when he had grown up, refused to be known as the son of Pharaoh’s daughter. 25 He chose to be mistreated along with the people of God rather than to enjoy the fleeting pleasures of sin. 26 He regarded disgrace for the sake of Christ as of greater value than the treasures of Egypt, because he was looking ahead to his reward. 27 By faith he left Egypt, not fearing the king’s anger; he persevered because he saw him who is invisible. 28 By faith he kept the Passover and the application of blood, so that the destroyer of the firstborn would not touch the firstborn of Israel.
29 By faith the people passed through the Red Sea as on dry land; but when the Egyptians tried to do so, they were drowned.30 By faith the walls of Jericho fell, after the army had marched around them for seven days.31 By faith the prostitute Rahab, because she welcomed the spies, was not killed with those who were disobedient.[d]32 And what more shall I say? I do not have time to tell about Gideon, Barak,Samson and Jephthah, about David and Samuel and the prophets, 33 who through faith conquered kingdoms, administered justice, and gained what was promised; who shut the mouths of lions, 34 quenched the fury of the flames,and escaped the edge of the sword; whose weakness was turned to strength;and who became powerful in battle and routed foreign armies. 35 Women received back their dead, raised to life again. There were others who were tortured, refusing to be released so that they might gain an even better resurrection. 36 Some faced jeers and flogging, and even chains and imprisonment. 37 They were put to death by stoning;[e] they were sawed in two; they were killed by the sword. They went about in sheepskins and goatskins,destitute, persecuted and mistreated— 38 the world was not worthy of them. They wandered in deserts and mountains, living in caves and in holes in the ground.39 These were all commended for their faith, yet none of them received what had been promised, 40 since God had planned something better for us so that only together with us would they be made perfect.
All these examples of faith in just one chapter of the Bible. So when I ask, "why me?" I must remember to ask myself, "why not?" We are each called according to our purpose, so we must have faith that there is reason and we must remember that Jesus told us to follow Him and to go forth and make disciples of all nations. As we take this journey together, we are going to reflect on questions, read scripture, and learn ways that we can do just as Jesus commands us. 

Part of your journey may be to share your stories with others. In other words, use your story to connect with someone else who may benefit from hearing your story, not your advice, but your story. Over the next few days think about it. Think about your story, your victories, and struggles. Now think about those around you---at work, in your neighborhood, or anyone else you encountered during the week. Is there someone who could benefit from hearing your story? Is God calling you to offer your experiences of God's faithfulness to encourage another in their journey? 

Let us pray:
Lord, Help me to turn away from being so selfish in my thoughts when it comes to sharing you with others. Help me learn to see those opportunities you give us to share about your love and grace. Help me to speak the words that need to be said. Help me to continue to have faith in all that you do, even when I cannot see any reason, any benefit. Lord, please steal my show because that is what I need from you. In your son's name I pray, Amen.