On January 9, 2014, our son Zacchaio was born via emergency c-section at 33 weeks old.
Although our Zacchaio has overcome his acute medical issues in the NICU, we're now faced with his rare diagnosis of Epidermal Nevus Syndrome. We don’t know what developmental hurdles to expect with our son’s diagnosis in five years, in six months, or even tomorrow. We can only embrace his journey and all the discovery that comes with it, not looking too far ahead and enjoying the beauty that is today.
Wednesday, July 30, 2014
We have made our decision.
A short meeting with the neurologist today confirmed the treatment option that we have been anticipating for the last 6 weeks. The plan is that sometime in the next two weeks, the #1 neurosurgical team in the country will perform a functional hemispherectomy which will disconnect the entire right side of Zacchaio's brain and render it useless.
Too many logistical details remain undetermined at this time, but we will go into greater detail about the procedure and our decision-making process in a future post.
We sit in prayer and contemplation and invite Team Zacchaio to join in.