Hello, Micro (from his caringbridge site)

Hello, Micro.

 

I dont think I will ever forget the first time I heard the term *microcephaly*. After months of worrying about my son, of struggling to get him to eat, of not meeting milestones, I finally felt confident we were headed in the right direction. I entered the office feeling confident we would have an easy-breezy appointment to check all the numbers and be on our way shortly. My presumptions could not have been more incorrect or shattered.

"Im concerned about Silas' head size" the rotund Dr said over his thick-rimmed spectacles. His voice still bubbly as he swayed my son in his arms. "It's not growing well, slower than average and it's very small."

I remember asking what that meant, what the possible causes were. The words he threw back at me were all scary, terrifying. Tumors. Brain Damage. Syndromes. "I'd like to schedule an MRI. I could do an ultrasound but they would likely just say it was inconclusive and ask for the MRI anyway, so we can step over them."

I drove home ith his words slamming around my head. "Silas has microcephaly.   Hopefully the MRI will give us an idea of why, but it might not." 

The call came later that day, scheduling the MRI for my 4 month old son. When the scheduling nurse started going over the rules and precautions for the procedure I about lost it. "You want my four month old baby who has struggled with eating all his life to go how long without any nutrition?" I nearly slammed the phone in her ear, but instead I said I understood and vowed to do some research when I had a minute.

The MRI went well. There were not any complications, but I was a wreck. I was there the first and last two hours alone. They had to fully sedate Silas, which meant intubation to preserve his airway. He looked awful when he was coming to, but he did well and we were on our way home shortly after coming to the recovery room. I had no sooner unloaded the car when the results came in on the phone.

The MRI showed a normally structured but very small brain. Everything looked normal. So, Silas' microcephaly was not caused by a brain injury, stroke, or trauma. He had no tumors or missing pieces. Those were all good things. Tears of relief slid down  my cheek as I hung up the phone. But then the fact that we were no closer to answers than before hit me, and I felt ache all over again. Thats the struggle, the unanswered questions.

So here we are, waiting on his neurology consultation to discuss further testing, go over his complete medical history, and try yet again to find answers to the burning question: What is causing his brain to not grow the way it should? Is his microcephaly genetic, part of a syndrome, or something unexplainable? What can we expect for the future?

His neurology appointment is the 18th of January 2013. I will do my best to update as soon as we know something or have a plan in place. Thanks for the thougts, prayers, words of encouragement, and taking the time to share in our journey. Be blessed and amazed!