There have been moments in the last 20 months where our community has completely overwhelmed us with their generosity. Our church family at Calvary and Brad’s home church, Blainsport Mennonite, and even Brad’s real estate office, Realty ONE Group Unlimited, have poured out God’s gifts to us in amazing ways. We’ve been blessed with meals, gas cards, gift cards and cash. Encouraging messages that arrived at just the right moment that have gotten us through some really dark days.
When we returned home from CHOP in late October, the neurologist told us to be very careful. Addy’s body would need at least four months to properly absorb her meds and stop her seizures. Until that time, we needed to make sure she stayed as healthy as possible.
To eliminate her exposure to germs…
I stopped going to the gym.
We stopped going to church.
We stopped playdates.
The following months were a rollercoaster as we rolled between hope and despair. On top of everything with Addy, Brad ended up going in for surgery to repair an injury he had in the fall, only to find out after being cut into that his tendon was already torn and was unrepairable. He was out of commission for several weeks. Addy had good days where she didn’t have any seizures. We had bad days where she had multiple seizures. We had good weeks where she went multiple days in a row without seizures and bad weeks where she had a seizure every day.
As the seizures became infrequent, Addy’s side effects to the medications became more pronounced. The sweet little girl full of giggles and goodness became fearless and frantic. We had to watch her every second—to protect her from herself. It was exhausting.
Our neurologist, Dr. Prelack, offered us some hope. She believed Addy would be a good candidate for brain surgery to remove the part of the brain that was causing the seizures. The challenge? They needed to pinpoint the exact part of her brain that was misfiring and causing the seizures. This surgery was usually very successful, with a greater than 90% cure rate.
We asked Dr. Prelack, “If Addy was your daughter, what would you do?”
“I’d have the surgery,” she said, without hesitation.
In late February 2020, we scheduled Addy’s first test to determine if she was a candidate for surgery. She was due for admission in early April. A couple of days later we discovered we were expecting our third child, due to arrive in October.
We had a plan. We had hope. 2020 was going to be amazing!!
In mid-March, COVID shut down everything. Including elective admissions at CHOP.
We were on hold until further notice. Our hope disappeared, but we did our best to keep putting one foot in front of the other.
Addy’s side effects from the meds continued to affect her behavior, her social and emotional development and her weight. She was hungry all the time.
We were watching and learning, though. We realized that Addy’s seizures were triggered by physical exhaustion. That trigger turned out to be key when she was finally admitted.
Thankfully, Addy was at the top of the list when elective admissions resumed in mid-May. Leading up to her admission date, we weaned her off her anti-seizure meds and she started having daily seizures.
At the same time, our church families blessed us with gas cards and gift cards for Doordash and Starbucks. The generosity, prayers and words of encouragement of God’s people sustained us as we walked this difficult journey.
Addy was admitted on May 20 for an elongated EEG.
The doctors told us they needed five measurable seizures. Given the rate she was having seizures at home, we were fairly confident she would be discharged in short order.
In the next nine days, Addy only had two seizures. And those were triggered because Brad kept her moving and made sure she was physically exhausted.
Because the process was dragging out, and they had two clear seizures, the doctors decided to discharge us. They mixed up her meds a bit to see if they could help us with her side effects.
We made it through a busy summer, embracing the time as a family and doing our best to live in the moment.
Addy had another MRI, with sedation. We prepped Ana for Kindergarten and learned that the baby growing inside me was a healthy baby boy. We also prepped Addy for her second pre-surgery test, set for September 14—an intracranial EEG.
And, another answer to prayer—Addy had been seizure-free since her May hospital stay. The mix of meds were still messing with her personality. She was fearless and aggressive. She would bite and kick and scream.
Day after day I had heartbreaking conversations with Ana who was tired and scared of the biting and kicking and screaming.
In addition, Addy’s speech and fine motor skills were delayed.
We continued down the path towards surgery because we believed it was the best opportunity for Addy. We were holding out for September because we believed we would finally have a path forward.
Sometimes, though, when a surgeon explains what he is going to do, you don’t fully understand what you are signing up for.
If he had said, we are going to drill 14 holes in your baby’s skull, perform brain surgery and she’s going to need to sit still for the foreseeable future and never leave her room, we might have hit pause on the process.
We were leaning into hope—into a 90% chance of being fully cured.
We didn’t foresee the hell that we were going to endure.
When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.Isaiah 43:2
An Unexpected Journey – Part 1 – And So It Begins – Read Here
An Unexpected Journey – Part 2 – Some Answers – Read Here
An Unexpected Journey – Part 4 – What Are We Doing? – Read Here
An Unexpected Journey – Part 5 – Read Here
An Unexpected Journey – Part 6 – Read Here
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