As I sit here staring at the screen, I wonder what words to write. I know that if I just start typing those words will come. They always do. And yes, this is going to be a Bradley post. Some may wonder why I write so much about his disease and what we go through. I do it because for me it makes it that much easier to talk about when I'm asked questions. I also do it for awareness. While much more is known now about Eosinophilic Esophagitis than there was 20-30 years ago, this is still a disease in its infancy. There are patients who are just now having to figure out new doctors to see because they are no longer a pediatric patient, but they have a disease that has mostly been dealt with in the pediatric world. I also do it because I know that there is a purpose, a plan for why Bradley has to endure this terrible disease. God says so many times in the Bible that we are called according to his purpose. That he will be there with us through those trials and that we will come out stronger.
This past month we have hit road block after road block in dealing with this disease. Today came more answers that we didn't want to hear, yet I think all along I've prepared myself for. You see when we first decided to move forward with the feeding tube I had already been preparing myself mentally for the possibility for a couple years. That last scope in December 2013 I knew before we ever made the trip that the results were not going to be what we wanted. I don't know how I knew, I just did. Even then I asked not just for prayers of good results, but for prayers that we would be able to accept whatever the results would be.
Then we started the journey. The life of tube feeding. Because I had prepared myself for the feeding tube, I also had prepared myself for what the future may hold. I held on tightly to the belief that the tube was the answer and that my Boo would get better. And he has. He went from an exhausted little boy who voluntarily stayed in from recess his 2nd grade year to a thriving young man who is now in the 4th grade. He went from almost falling off the charts from being so little as far as weight and height to now being in the 25th percentile. We finally were able to buy him clothes because he grew.
Going into this life of a feeding tube, I knew the possibilities of being on the tube for years to come was very likely. I was ready for what life would throw at us. But then we got to bounce happily along on the journey for 17 months. Unlike cases of children who would be immediately stopped in their tracks with the first food reintroduced, we made it up to 16 foods with successful introduction. And then we hit the road block. I saw it coming with white potato because that one food seemed to do something that I couldn't quite put my finger on. So while it was a blow to find out he is definitely allergic to white potato, it helped prepare me for the scope that I knew was going to be bad for the first time in 17 months. However, I don't think I quite prepared myself for the rest of the results until the past week.
You see when we found out about potato and decided to do bloodwork to check the other foods instead of trial and error, I allowed myself to go back to that point of prayer of "please God, help me to accept what we are about to endure." Some may say I am borrowing troubles from tomorrow right now and maybe I am, but I feel that I am preparing myself for what life ahead will be like.
All the cases I've read about or seen videos on, those kids came to their limit. They knew their number and that the number most likely won't increase. I personally feel we may be entering that zone with Bradley. And to be honest, the results today didn't impact me near as much as the potato results because I think I already knew. I had already started coming around to the idea that we are at a roadblock and we may be here for quite some time. And we are going to learn to live with it and do as we have done since Bradley was a year old....look at the positives because if we focus on the negatives the weight can be unbearable.
Today I received confirmation that he is officially allergic to oats, rice, watermelon, and linseed (flax seed comes from this). The only thing that he may be able to keep is cocoa, but even that I'm going to keep an eye on since it was close to borderline. All those other foods tested in the high range. And yes, I cried for a moment and I'm even a little teary right now. But they are tears of feeling so frustrated for my little boy. Afterall, what parent wants to deny their child food? But I have to if I want my little boy to be healthy.
So here I sit this evening prepared for what is ahead on our journey. Yes, I will be super picky about any food or drink that is found that may be potentially safe and I will scrutinize even the tiniest ingredient. If it's not officially safe and hasn't officially been introduced after a clean scope, then it's going to be a firm, "No Bradley can't have that." Yes, I will pray that his next scopes come back clean and we will take the next steps to see if his number gets to go higher than 16. But I'm also going to be accepting and help Bradley in every way to be accepting as well of whatever the journey ahead holds. Of course, he's been more accepting than me sometimes.
He's a fighter and he's my hero. This is not the way I ever dreamed it would be, but it is our reality.
