Here is what has happened since I last wrote. Micah finally had the long-awaited full diagnostic developmental evaluation at Stanford. The evaluation lasted three hours and covered essentially every area of development. I got more bad news there, his development in every area was falling further behind, and I was told that Micah has a Global Developmental Delay. While his doctor (Dr. L) was observing his physical abilities, another doctor (a neuromuscular specialist) happened to pass by and Micah caught her eye. She had him walk up the stairs several times, and looked concerned as she watched him run and get up from the floor. She commented on his muscular legs, and told Dr. L to have his muscle enzymes checked and that was that. I didn't think too much of it. We left the appointment with a long list of blood tests we should get done, to rule out any genetic issues. She also wanted Micah to visit the neurologist. Leaving that appointment, I thought GDD was going to be the final diagnosis, and was focused on that.
We visited the neurologist, Dr. D. She didn't talk to me about anything specific, just did a short physical evaluation. She also said we should get the muscle enzyme test done in the next few days, and that she would see us for a follow up in a few months, as long as his muscle enzyme levels were normal.
Since I'm the curious type, I googled the blood test she wanted Micah to have, along with her comments about Micah's muscular calves. It was then that I realized what she and the other doctors weren't saying. Micah was being tested for Muscular Dystrophy. My initial reaction was one of disbelief. There was no way that Micah had MD. I didn't know much about MD but I assumed it was something that would have been evident at birth and something I would have known about by now.
But the more I read, the more discouraged I became. We had to wait for several days for the results, but I already knew the outcome. I felt like I had been kicked in the stomach. When his neurologist finally called with the blood test results, there was no shock when she told me the news. We agreed to meet the next day to discuss the next steps. I hung up the phone and just started crying. I felt like Micah had received a death sentence. In my mind, I knew that Micah was the same kid as he was the day before, that nothing had really changed, after all, Micah has had MD since he was just a couple of cells. And yet, everything had been turned upside down with this diagnosis.
We met with his neurologist the next day who explained that we needed to do a genetic test to determine exactly what type of MD he has. Based on his symptoms and history, we pretty much know that he has Duchenne Muscular Dystrophy, the most common, and severe, type. We will know for sure in a few weeks when we get the genetic test results back. She was able to answer some of our questions and explained that Stanford has an excellent MD clinic. We have our first appointment there in a month, and hope to get more answers at that time.
I'm feeling pretty low at this point. I've been on an emotional roller coaster for the last few weeks. I have moments where I can't stop crying, and am a hysterical mess, and moments where I feel total peace and comfort and hope. Mostly, I am just incredibly sad. I've had to completely ban myself from google, as nothing good comes from my searches. I get very overwhelmed when I try to think about the future, so I try as hard as I can not to. Approximately 47892 times a day, I tell myself, "just take it one day at a time." Today is all I am emotionally capable of dealing with.
From what we have been told, while there is currently no cure, there is some hope in experimental treatments. I will write more about that after he starts going to the MD clinic in July. I don't really know any details, but I am extremely hopeful that there is something out there that can help Micah.
Things are hard right now. I hope they will get easier as all of this sinks in. I do have a positive attitude, and take comfort in my faith of God's plan. I know that He is watching out for Micah and our family. I know He loves us. Even with all the sadness that I feel, I also feel assurance that we are being watched over and cared for, and that somehow, everything is going to be okay. We are extremely grateful for the prayers and fasting and support that we have received, it has strengthened us and means so much.
Please pray for Micah. Please pray for his mom and dad, too. We need it.
