Monday, March 5, 2018

MRI Results

Last week, we took Ezra to get an MRI of his brain. He was such a trooper waking up before the sun, driving an hour to the hospital, and waiting while Auston and I filled out paperwork and answered questions.

He refused to let go of his fun, new "toy"... the hospital bracelet. Ha!

After rousing from the anesthesia, he was upset and dizzy. Fortunately, it didn't last long. Within 15 minutes he was back to his usual, happy self. He felt so good that he ate a big breakfast of Chick-fil-A chicken minis and hash browns!

Chick-fil-A makes everyone happy, right?

Maybe it was wishful thinking, but I was convinced that Ezra's MRI results would come back normal. I was more than a little surprised when our developmental pediatrician's first words were, "I got the MRI results... and they're unusual."

The MRI revealed that part of his brain - the myelin sheath - is smaller than it should be.

"What on earth is myelin?" was my first thought.

Myelin is the part of the brain that covers nerve endings and speeds up nervous impulses. Because Ezra's myelin is underdeveloped, the messages that his brain sends to his body and his body sends back to his brain are very slow or sometimes incomplete. This is the reason for his significant motor and speech delays.

I need to go down a bit of a rabbit trail for a moment, but I promise it loops back to the diagnosis.

3 weeks ago Ezra woke up in the middle of the night with a low-grade fever and was violently seizing. He seized for 5ish minutes and as soon as he stopped, we rushed him to the ER. The ER docs couldn't understand how a 102.2f fever could cause a febrile seizure (febrile seizures usually don't start until about 105f), but that was the only explanation they could come up with. They sent us home with some apple juice and amoxicillin and we took them at their word. Somehow, all of this made its way to our developmental pediatrician, because he brought it up on our phone call. He doesn't think a fever of 102.2f could cause a febrile seizure and he suspects that Ezra has an underlying seizure disorder. A low-grade fever isn't enough to trigger a febrile seizure, but it is enough to trigger a grand mal seizure in someone who is already prone to seizures.

So we're scheduling an EEG for Ezra and, depending on the results, meeting with a neurologist in the near future.

Now more than ever, our developmental pediatrician is convinced that Ezra has a genetic disorder. I guess I assumed since technology is so advanced that genetics would be, too, but apparently that field is still in its infancy. The developmental pediatrician warned us that we have a 50/50 chance of finding a diagnosis for Ezra. In his words, he knows that Ezra has a diagnosis... he just doesn't know that we'll ever find it.

Isn't that kind of like life, though? We don't have all of the answers, so we work off of what we know and we learn from our mistakes. Hopefully we'll find a diagnosis for sweet Ezra so we can correctly tailor his care, but even if we don't, God is sovereign over this situation. He designed Ezra. He loves Ezra. And He is glorified by this special little boy bearing His image.


  1. Oh Mary, your poor heart. It is so hard to wonder, isn't it? Jonah had to have genetic testing...he has a seizure disorder, a connective tissue disorder, an auditory processing disorder, and his aortic stem is dialated a bit too far. They know all of this leads to a genetic diagnosis, but because genetics is so young, they don't yet know what that diagnosis is. This is frustrating because if he ever needs meds to help the dialation in the aortic stem, they won't know exactly what to give him. Thankfully, so far, meds have not been necessary for that, although he is on meds for his seizure disorder.
    If you have a local children's hospital, they are so, so excellent at providing care and helping get the best information.
    Ezra is beautiful. He is fearfully and wonderfully made. You are a beautiful mama and you will all be ok. Much love from my special family to yours. <3

    1. I didn’t know any of that about your son. I completely understand how hard it is to not have answers. I’m glad to know I can come to you if it turns out that Ezra does have a seizure disorder!