Although I feel sometimes I write a ton about Bradley, I again have to turn to those stories. This has been such a whirlwind of a year.
January: At the end of December Bradley requested to be baptized. Later in January, we met with Bradley's MUSC doctors to determine a plan because he was, in my opinion, declining in his health. He had no more energy, he was in pain more times than not, and although his biopsies from his colon and esophagus had dropped, they dropped very little. Since his diagnosis years ago, I had been preparing myself for the possible, but still holding on to the chance that we wouldn't have to take the path we are now on. January 26 my sweet little boy announced his acceptance of Christ and was baptized before the congregation at church. What a glorious day! He is such an amazing young man. So strong in his faith and so much braver and accepting than I think I could ever be if I were in his shoes.
February: Bradley's last birthday cake for a while as we celebrated him turning 8. We took Bradley for a bone density scan and one for his sinus cavities as well. We also met with the surgeon for the first time. Within weeks we would be making a HUGE life change. His January bloodwork confirmed iron deficiency and his bone scans confirmed that his bone density wasn't quite where it should be. More proof that the decision we made on that morning in January was the right choice. During this month we also had a pouring on of prayers as well as monetary help for some of the expenses involved...gas, hotel stays, etc.
March: Time was finally here. Surgery day arrived and our lives all changed. We had to learn how to even begin to fill out paperwork to receive help with medical expenses as well as paperwork to qualify Bradley as disabled since that would be the primary reason for needing the medical help. My little boy who should be allowed to just be a little boy....play how he wants, run around outside, eat me out of house and home...ate his "last" full meal of foods he liked not knowing when he will ever, if ever, he will get to eat them again. March 8 my baby boy went back with the surgeon and came out with a feeding tube leading straight to his stomach. Boy was it awkward at first and he seemed so small. We were also blessed with receiving enough supplies to last us for about a month.
April: We were getting the hang of things, still had some supply, but had to start figuring out how to feed Bradley using our own funds. One can costs anywhere from $35-$60 and that one can only lasts about a day. Multiply that times 30 days in a month: $1050-1800. Just to feed Bradley and that didn't include his doctor visits, g-tube replacement kits, medicines, gauze, tape, etc. That was just for formula. We also had not heard anything about assistance other than our regular insurance would continue to deny because he is physically capable of eating by mouth. Well you see, prayer and faith is such an awesome thing. Just when I was trying to find just enough money to scrape up to get us through another week, I would open the mailbox and there would be a check for such an amazingly generous amount or someone would come up to me at church and slip something in my hand and whisper "for Bradley". Each time I knew it was God's way of saying, "I've got this. Don't lose faith. Keep leaning on me." April also brought the death of my first grandfather. So only 4 months into the year and life had already been a roller coaster.
May: Bradley visited his dietitian and had his surgeon follow up visit early that month. The good news in all this time...he was tolerating feedings well, only had some granulation tissue problems, and was starting to gain some energy. The not so good, he was not gaining any weight. He had actually lost another pound. Since he was tolerating feedings, we increased his intake. Well an increase in the amount also meant an increase in how much formula was being used in a day. Now that almost a can a day really was close to the entire can a day. Mark and I also learned how to change out his g-tube. She made it look soooooo easy.
We also started investigating why we hadn't heard anything about medical help. Amazingly the main office never received our paperwork and no they could not expedite so it would be another 60-90 days. I knew we would make it through, but was trying to figure out how.
June: Mark had also been working with the regular insurance and amazingly through the grace of God, he got someone who talked him through the appeals process once they understood the situation. Bradley's doctors got the letters written in just a couple days and Mark sent it in.....and it was expedited. And by expedited I mean that within 24 hours of Mark faxing in all the paperwork, we were getting phone calls stating that everything was approved. You hear right. Our shipment of supplies and formula were shipping out to us. We received that first shipment just in time.
And then the next blow came, my other grandfather passed away. So here I was in 7 weeks time I attended both my grandfathers' funerals. Later this month came the day we had been anticipating....his first round of scopes since the feeding tube was placed. I knew not to be too hopeful based on just the visual look of things because that had been deceptive in the past so I anxiously awaited the biopsy results. The second they were available I had to look and look again. His counts were 3 and 10. I know that doesn't mean much to you. The counts are the amount of eosinophils (white-blood cells) and the should not be found in the esophagus or colon at all. The counts in the past had been in the 70s and 80s. The feeding tube was working!!!!!
July: We added black beans to Bradley's diet and he was so thrilled. By the end of the month when we had our follow up GI visit, Dr. Carter-Kent was so thrilled to see Bradley. He had moved from the 11th percentile in weight to the 17th percentile!!! He had gained about 2.5 pounds. He was also more energetic than she had ever seen him in the past 3 years. On the right road....and instead of scopes every 3 months, she decided we will wait 6 months! We also get to discuss adding one more food back. So in addition to being allowed to eat beans, lettuce, broccoli, squash, green beans, carrots, sweet potatoes, plums, apricots, peaches, and pears, we would get one more. Now for the foods allowed you can see they aren't really packed with calories nor are they foods most children eat. In reality Bradley eats versions of sweet potatoes (we can use a couple of safe oils for cooking and he gets to add pepper), pears, pure apricot juice, pure peach juice, and black beans. And sweet tea. Don't forget the sweet tea. But it is all a start. We also were notified of Bradley being approved and qualifying for medical help via a disability.
August: I got to see my baby splash around in the ocean like I hadn't seen in years. Although short lived, I thanked God for that moment. That reminder that He has this, but also to be patient because this is a slow process and He has plans in store that require us to endure this part of life. School also started back. Along with all the problems associated with school....mold, dust, being outdoors. So some skin problems started flaring a little.
September: And here we are. Six months have already passed since the g-tube placement. It is so hard to believe. Some days it feels like it was just yesterday and other times it feels like a lifetime ago. It can be exhausting at times. Think about it....you think you are through with feeding someone almost around the clock and then all of a sudden you are back to feeding a child, your 8 year old child, every 3 hours. Thankfully there aren't night time feedings involved since we can get all his calories in during the day, but you never realize just how quickly 3 hours can pass sometimes. We also just discovered a new road block. After having to suddenly pay for meds again, I was looking up his account to see if the hours were listed or if there was any real information I could access online. My heart sank when I saw the words CANCELED next to his name. I immediately posted for prayer warriors, cried a little, and lost myself in music. I know we will get through this one, just like we've gotten through everything else. We have God on our side.
So these obstacles placed before us are just that: obstacles. God has given us the ability to fight the good fight. He holds us when we need him. He gives us strength when we are weak. We just have to let go and let him. I have a feeling the fight isn't over yet. Cause you see, Satan has his work cut out for him when we are working on God's side. He has to fight harder to get us to forget God so obstacles are going to come up. Some of those obstacles are God's way of making us stronger and other's are Satan's way of trying to get us back. So in the song my mom shared since the time I was little: "Get thee behind me Satan, get thee away. I'm gonna be a Christian soldier and I'm going to learn to pray."
1 Peter 5:8-11
Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings. And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen.
So as you reflect on your own testimony tonight, what parts of your life story do you see obstacles? What did you do? Did you stand firm in your faith? Did you discover your faith was a little more shakey than you realized? Did you stray from the path and have to find God again? What is your story?
Let us pray.
God, we know that there are going to be obstacles in our way. Some to try to prevent us from doing your work and some trying to sway us in our faith in you. I thank you tonight for the strength to endure and fight the fight. I thank you for your faithfulness. I thank you for all the little things that when I trust you completely you provide. Thank you for loving me God. Amen.
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