Wednesday, August 13, 2014

Tomorrow is THE day.

 As I write this entry I'm sitting next to Zacchaio in bed and watching him fall asleep on my pillow; except he hasn't been able to fall asleep for the past 2 hours on account of his constant seizures and spasms. Since beginning our quest for brain surgery one month ago we have witnessed a disheartening evolution of his seizures and regression in his development. His seizures have increased in frequency (now up to 400 per day), and they have increased in intensity (contracting muscles, uncontrolled dropping of his head, intense pulling of his eyes to one side).


He is often disengaged from the environment and people that surround him. I miss his blue eyes looking deeply into mine.

His smiles and joyful expressions are no longer generated by our silly faces or the tickling of his feet; they are seizure-induced. There were multiple occasions where I found myself resenting his seizures for eliciting the euphoric emotions they did, but after hearing the bloodcurdling screams that preceded the seizures of other children in the epilepsy unit, I am grateful.

He no longer has the strength or stamina to hold his head up during tummy time. The gains he made with persistent therapy and hard work have been lost.

His sweet baby coos have been silenced. He often moves his mouth in anticipation of generating sound without ever producing one.

In refusing to lose anymore of the charming and resilient baby boy God has blessed us with, we're taking a tremendous leap of faith tomorrow, an average Thursday, with hopes of him being seizure-free and leading a normal life..

Tomorrow, on August 14th, Zacchaio will have a right posterior quadrant resection. 

In other words, Dr. William Bingaman (from the Children's Cleveland Clinic) will remove a quarter of Zacchaio's brain; most of his right parietal lobe, all of his right occipital lobe, and all of his right temporal lobe. This contrasts the right hemispherectomy that was recommended by Boston Children's.

Fiducials (brain markers) are in place, now off to MRI!

In removing the back half of Zacchaio's right hemisphere, he will permanently lose the left half of his vision in both eyes. To have a better idea as to what this would look like, Zacchaio would perceive a landscape as depicted in the image below. Our understanding from Dr. Bingaman as well as parents of children with identical deficits, is that children learn to compensate for the loss very well. Though Zacchaio might only be able to see half of our faces, if he can truly see half of our faces, I will consider ourselves incredibly fortunate.

The distiction between a quadrantectomy and a hemispherectomy for Zacchaio is the preservation of his sensory and motor cortex, allowing him complete sensation and fine motor skills of the left side. I feel inclined to mention that this surgery is by no means a guarantee of seizure freedom. There is a chance that Zacchaio continues having his current seizures post-operatively. If this is the case, Dr. Bingaman will take Zacchaio back into surgery to remove the remaining right-sided brain tissue, which ultimately completes a hemispherectomy.

There is so much more I can write, however my goal in getting this blog post published tonight is to unite Team Zacchaio in faith, prayer, well-wishes, and love for a successful surgery.

We will arrive at surgery check-in at 5:15AM EST tomorrow morning. Once the 5-hour surgery is underway, we will receive text updates via hospital pager as surgery progresses. I will be posting photos of pager messages in almost real-time for you all (if any of you are up that early)!

May God grace our sweet baby boy with the strength to survive surgery and overcome his epileptic hardships. May He steady and guide Dr. Bingaman's hands with His mighty hands while instilling in him the necessary wisdom. May He work miracles through Zacchaio so he can one day live with a renewed spirit in His light.

A partial baptism the night before surgery by local Greek Orthodox priest Father Steve.
We rejoice knowing he is truly in God's hands!


  1. Peace be with you and your family

  2. May God bless you all, keep the faith, we are praying for all of you.

  3. May God guide the hands of the surgeons and protect your baby. Take comfort in knowing there are so many people praying for youGod bless.

  4. Hi - you may not know me as I am Sati -Gagan Kingra's friend. I have been touched by your journey and I pray for your beautiful baby boy to have a successful surgery tomorrow. Your strength and courage has been inspiring :) sending you and your family lots of love and prayer ❤️

  5. May the Theotokos hold baby Zacchaio in her arms like she holds her Son and protect him.

  6. We all have to have utmost faith tonight and tomorrow as the surgery progresses. We all want the very best for precious little Zacchaio. My prayers are for you all tomorrow and in the days that follow. What an absolutely beautiful and touching picture it is of little Zacchaio being baptized by Father Steve. I am holding that image in my mind tonight.

  7. God bless you. We will be praying for your beautiful boy.

  8. Have mercy, Lord. Praying for your family!

  9. It was very touching to me that all of the medical team prayed before going into surgery, that was very uplifting and brought tears to my eyes. I know that God is watching and protecting Zacchaio, and I pray that all goes very well with the surgery, and that after, the results will be very good. It was beautiful that Fr. Steve was able to baptize him. I am praying for your beautiful boy, and for all of you.