Hi everyone,

We’re back from the hospital after a successful EEG and neurosurgery.

Emma is in good spirits and greatly enjoyed a donut yesterday.

Headlines below.

EEG showed additional seizure activity

It was Emma’s least favorite part of the trip — she had to wear a head wrap of leads and stay stationary in the bed for ~24 hours.

The results brought a mix of emotions. We’re very glad we did the extra EEG, but it revealed she is having 4+ short seizures per day. The neurology team increased her anti-epilepsy medicine by a decent margin.

Undoubtedly, managing seizure activity will be an ongoing topic in this journey.

Surgery was successful

The port for her enzyme treatments was placed in her head, above her forehead but below her crown on her right side. Her brain didn’t have any concerning reactions to it, and she seems to have very little pain generally.

You can click here to see a visual illustration of her type of port.

Katie and I have been surprised at how quickly she’s bounced back from it and how little she seems to acknowledge a 3-4 inch incision on her head!

We’re grateful for the doctors.

Enzyme treatments to begin soon

Now that she has the brain port, she’ll be ready for her first enzyme treatment in the coming days, as soon as it’s approved by insurance and scheduled.

As a reminder, these infusions will insert artificial enzymes (the kind her brain doesn’t make but should) into her brain. They aren’t as good as real ones, but they will likely slow some aspects of the disease’s progression. They may also help to control her seizures.

She’ll receive these infusions every ~14 days for the remainder of her life, or until we choose to stop them.

Our people are the best

Your calls, texts, hospital visits, and gestures of support this week — just, thank you.

Again, we continue to feel not alone.

Today is Annie’s 6th birthday!

And, today, we are celebrating the gift of Annie. What a joy she is to our family. We’ll all spend the late afternoon playing putt-putt and eating at Chick-fil-A (both her requests).

She brings a spirit of levity and passion to our home in the perfect way, and it’s so fun to watch her grow.

A side note: even within this update, you can tell there’s a reality for our other two kids in being pushed aside a bit in the wake of Emma’s medical issues. We’d rather our kids’ birthdays not be a 5th headline in an update email. But, we’re asking God to bless our efforts to love our older kids well around Emma’s issues, particularly today. 🤍

Reflecting on “daily bread”

It’s safe to say Katie and I have a lot of uncertainty on the horizon. Perhaps much more pain, but perhaps miracles, too. Regardless, we’ve never felt more like our future is beyond our influence.

The Bible sure has a lot to say about that.

One instance is Jesus instructing his disciples to pray for their “daily bread.” 

That’s a 1-day planning horizon (he didn’t say, quarterly or annual bread).

God is teaching us how to lean into his provision and presence for today, not tomorrow. Though our minds and hearts may be rightly and wisely concerned about things past and future, exercising our faith is always in the present. And that means the opportunity to encounter him is there too. He is our daily bread.

What’s next?

• Regular enzyme infusions will begin within days.

• A night of prayer & worship for Emma at CityScape Church in Columbus, GA in the next few weeks (date TBD).

Resources that have encouraged us

• Song: New Wine, Hillsong & Brooke Ligertwood

• Devotion: The Test of Character, Oswald Chambers

• Sermon: Patience, Tim Keller

Prayer requests

1. Faith. Our trust in God would grow deeper despite new challenges.

2. Emma’s sleep. She’s had some better nights, but we need her sleep to improve further.

3. Swift infusion approval. We need the infusions to be approved by insurance and get scheduled soon. This will also enable us to start building a new sense of routine as well.

4. James and Annie would feel loved and cared for despite the disproportionate attention given to Emma’s urgent matters these days.

We’re thankful for…

• Our family’s and church community’s continued love and care for us.

• Competent and caring doctors.

More updates to come.

Love and gratitude,

Stephen & Katie