4am on Tuesday morning Boden and I hit the road. Our appointment was scheduled for 6 hours later in Salt Lake. I don’t think I slept the night before — I was worried I’d miss my alarm and I was excruciatingly nervous about the outcome of the appointment with Dr. Butterfield that we had waited nearly 7 weeks for (more on why it took so long later…).
We have only shared some of the “why” we were so worried about Boden’s diagnosis with most of our friends and family. Muscular Dystrophy is an umbrella diagnosis for a variety of forms of dystrophy with various names — over 40 to be accurate. What most of you didn’t know, and which we finally feel comfortable sharing, was that one of the forms they thought Boden might have was Lou Gherig’s (ALS). The weight of that diagnosis possibility has been nearly crippling. Ben’s dad, two aunts, and his grandmother all passed away from complications related to ALS. It is not a pretty disease and the thought of our sweet 14 year old son having it has been, at times, overwhelming. I know that most of you reading this, who know us personally, just took a deep breath and probably put your hand over your mouth. It’s alright. We really weren’t ready to share that part with many.
From the moment Boden was diagnosed with Muscular Dystrophy, I knew we needed to go to Salt Lake. Immediately after arriving there, I was impressed with Primary Children’s and felt at peace. From the moment we walked in, they were friendly, the clinic was bright and open, and the doctor was extraordinary. He spent well over an hour with Boden and I. Asked questions, answered questions, had Boden do a series of motor exercises (handwriting, standing on one foot, walking up and down the hall, etc.). He ordered some blood work and we were already scheduled for an EMG later in the afternoon. After all of his physical exam, he was ready to talk about what was going on…what could be ruled out and what couldn’t be ruled out. I waited. I literally was holding my breath.
“Boden, I don’t think you have anything bad. I think you have something but I don’t think it is bad.” In that one moment, I felt this huge relief literally lift off of my chest and took a deep breath. I uttered a thousand prayers in my heart to my Heavenly Father. What you probably don’t realize at this point, was that if Boden had ALS, that meant my darling, handsome soul-mate had it, too. ALS can be hereditary. In this case, Ben has a 50/50 chance of having ALS since his dad did and then a 50/50 chanced of passing it on to Boden (and our other 3 biological sons). You can’t imagine the weight of that until it is lifted. I wasn’t just relieved for Boden…I was relieved for my husband, too.
In addition to the EMG scheduled for later that afternoon, Dr. Butterfield ordered a blood panel. We will have more testing after those results come back in a few days. Those results will dictate whether he is having a spinal tap (done in SLC) or a muscle biopsy (done here) or both. But, we are reassured that whatever Boden has is treatable and managable and not “bad”.
After eating in the cafeteria, we went to have an EMG. Essentially, it is a test to see how well your muscles and nerves are communicating. Using needles and sound, they can tell electrically what your muscles are doing and how well they are working together. In Boden’s case they were looking for Myotonia or Dystonia. Here are a few pictures of his procedure and he said multiple times throughout the procedure that he wanted to do that when he becomes a doctor. Perhaps the idea of torturing a sibling?? HA!
There were two parts to Boden’s EMG. The first used a tiny impulse wave to the muscle and then listening to how the muscle reacts at various time points — 1 minute, 5 minutes, and 10 minutes. The second part, which I have photos of, is to insert a tiny needle in to his muscle and then listen to the electric sound waves your muscles make when stimulated.
Boden’s EMG results were great — absolutely normal! So while it didn’t help identify what is going on with him, it certainly was great to be normal! He told me I could no longer call him weird because now he had proof of being normal.
Shortly after 3pm, we hit the road again. A little In-n-Out Burger and before we hit Ogden, he was asleep. I would glance over at him from time to time and felt this overwhelming sense of gratitude and love. How lucky I am to be his mother. How lucky we are to be a forever family. How lucky we are to live in a time when medical advances can answer the oddest of questions.
So now, we wait for the blood work to come back and then Dr. Butterfield will develop a plan based on those results. In particular, they are looking at something metabolic or mitochondrial. Either way, we are absolutely relieved and grateful to be out of the “bad” zone and moving forward.
Thank you for praying for our family — for all of the calls, texts, messages, and love you have given us. While this trial is not over for our family, we couldn’t have made it through the last few months without you. So many of you were messengers from Heaven and mana to our souls at a time when darkness threatened to consume us. From Boden and our family, we express our love and appreciation to each and every one of you. THANK YOU for petitioning the Heavens on our behalf.
From the Land of Chaos,
~ Bridget, Ben, Boden, and the Herd