Another week! Laura's throat started feeling funny again this past week. Luckily, when she rated her "swelling", she kept giving it a 1 on a 1-10 scale. And, she had no other symptoms. So, she got to go ahead and updose! YAY!!! That means that she is now eating 37.5 mg of peanut protein every twelve hours!!!
I have been feeling many emotions the past few days. As I mentioned before, I have known for many years that OIT was a route that we wanted to take with Laura. Once you have had a child limp in your arms struggling for breath, you develop a different kind of passion. You NEVER want to have to face that again. When you see your child miss out, EVERY DAY, you want to end the pain for them. When you watch the disappointment in their faces constantly, you want to change things for them. It is SOO hard to watch them HAVE to learn to LIVE with this terrible diagnosis day in and day out.
We used to see an allergist in Salt Lake City for many years. I used to drive him crazy in my questions about OIT and when we could do it for Laura. He would make phone calls for us, every time I asked. But, he would always come back and say he just didn't understand. "You handle this allergy so well. I can understand if she was in the emergency room all the time with anaphylaxis. But, she isn't. You do a great job of avoiding her allergens. I just can't grasp why you would be so passionate about pursing OIT." He simply couldn't grasp HOW HARD it is for these kids to live day-to-day. How much a food allergy impacts their lives. How much anxiety becomes centered around food for these poor kids. They HAVE to live their lives knowing that they could die if they eat the wrong thing. And that "wrong thing" is everywhere!!! I cannot describe the toll that this has had on my beautiful daughter. It is not about the inability to eat a peanut butter sandwich. I really could care less if she could ever eat a peanut. BUT, I want her to live WITHOUT constant fear and anxiety. I want her to be able to go to church without having reactions. I want her to be able to go to school or work without being scared. Or bullied. I don't want her to constantly have to watch the birthday treats be passed out and school and just have to watch all the other kids eat. I want her to be able to go to a birthday party. I want her to be able to go to family or church potlucks without having to watch everyone else eat. I want her to be able to go to girls camp. I want her to be able to eat out in restaurants or stay in hotels without having reactions. I want her to LIVE WITHOUT THE FEAR OF DYING. Peanuts? Tree nuts? Eating them is not our goal. LIVING IS OUR GOAL.
I have wondered for a while WHY Dr. Jones decided to start offering OIT for his patients. Because I have studied everything I could about peanut allergy research and OIT for over 11 years, I know that there is not much incentive for a doctor to offer OIT. They really do NOT get paid enough to make it worth their while. There are not very many doctors that offer it. It is stressful, time consuming, and frankly probably scary in our litigious society. And, they have to do a lot of work for the same price as an office visit. So what is the incentive?
Yesterday I asked him. I wished I could have had a recording of his answer. I am not sure how long he talked to us, but it was not a short answer. Deep down, I think that Dr. Jones is one amazing and good man. He is doing it because he cares. He is doing it because HE DOES GET IT. He understands that it is not as simple as carrying an epi-pen and not eating peanut. He CARES about the impact of allergies on these kids more than he cares about earning the big bucks. He TRULY wants to make a difference. Even at his own expense. He WANTS to change the lives of these kids. And it is hard. It is not an easy fix. It not as simple as giving us a script and telling us to come back in a year. It takes some serious commitment on his part. He is ALWAYS on call. He is ALWAYS available for us. When these kids get a hive, or a "swelling in their throat", or an ear infection---he is answering the phone and talking to us. And texting us to check on them. He is taking away from his personal time to make sure they are ok. Because HE REALLY CARES. And guess what? These kids can tell. They know that Dr. Jones is changing their lives and taking them to a safer place. EVERY TIME he walks into that OIT room to say hi and check on Laura, her FACE LIGHTS UP. She knows that it is about her and about giving her a better life. Freedom. For that, we will be forever thankful that we found Dr. Jones.
Thank you Dr. Jones!!!
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