Dear friends and family,

Thank you for continuing to walk with us in such meaningful ways. We love hearing from you and are so grateful for your continued prayers and support.

We’re reaching out today to offer a big thank you for worshipping with us last month and an update on what our daily lives are like right now.

Night of Worship: It was a glimpse of Heaven on Earth

Just…wow. Words won’t ever do justice to the love and kindness we experienced with and from you on July 28th. We prayed, we sang, we cried, we laughed, and we watched the hands and feet of Jesus walk into our church’s sanctuary in the most beautiful way. Thank you to everyone who came, who worshipped online with us, and who set aside time to pray.

The overwhelming sense I had when the night was over was one of humble gratitude and hope. The road ahead of us will feel long and hold true sorrow. We will walk with this limp until we breathe our last on this trouble-filled planet. BUT. In that moment, all will fade away, and the rest of eternity will be like Sunday night — except perfect and better. We’ll be with the perfected people of God in the very presence of God forever. Emma’s suffering and every other ache in this life will be proven light and momentary. The best is yet to come.

How is Emma currently?

By God’s grace, Emma’s quality of life has improved greatly since a few months ago. We are finally settling into an anti-seizure medicine that seems to be working well for seizures but not causing unwanted side effects. The first three meds she tried were a doozy in terms of disposition and mental clarity. She suffered a lot from rage and irritability on the first, then mental fog and hampered speech on the second. The third was layered on top of these and may have been causing nighttime waking. We are grateful for options and that we found one that’s helping!

Our biggest struggle on a daily basis is disrupted sleep. In January she was sleeping ~13 hours/day without requiring any help to get to sleep or stay asleep. Now she needs help getting to sleep and wakes in the night needing one of us to sleep with her. We’re not sure if it’s meds, disease, seizure activity, or a combination of the three, but Batten Disease is notorious for disrupting sleep — this will be a very long and tiring road. Em functions so much better when she’s well-rested (as do her parents!), so please keep praying we’re able to find the best solutions for all of us.

What are Emma’s infusion days like?

Emma’s third infusion is now in the books, and we are gleaning tips and wisdom each time we go back. Our typical day goes something like this…

• 5:45a — We roll out of our driveway.

• 7:45a — Arrive at CHOA, load up in our big wagon, and check in at the infusion center.

• 8:00 - 9:30a — Emma’s enzymes leave the freezer when we arrive. We play in the child life playroom and visit with other patients while we wait for them to thaw.

• 9:30a — Emma takes Tylenol (to prevent fever) and Benadryl (to minimize wiggles during the infusion).

• 9:30-10a — The neurosurgeon NP arrives to access Emma’s port. She draws spinal fluid first to test for bacteria, then sets up Emma’s line, wraps her head in her “Olaf hat,” and the 4-hour timer starts.

• 10a-2p — Emma plays by her hospital bed for a while, enjoys a yummy lunch, and then we nap together (we bring white noise and pass out!). We wake up and play a little more or watch a show.

• 2-3p — The enzyme syringe is empty, but the line needs to be flushed with electrolytes. These require an additional ~50 minutes to infuse.

• 3-3:30p — The NP returns to de-access Emma’s port, and we are cleared to head home.

• 4-6:30p — We drive home and arrive just in time for dinner.

What’s next?

• Next enzyme infusion 8/14

• James & Annie start school for the first time ever on 8/20

How you can pray for us

We have a lot of changes underway, and we would be so grateful for specific prayers for our family…

• James and Annie start in-person school for the first time ever on Tuesday, August 20th! They’ve only been homeschooled up to this point. Please pray for meaningful moments of togetherness as we enjoy these last few days of life as we’ve known it? We are mostly excited, and we are so grateful for such a wonderful schooling option that will ease our transition out of homeschooling, but we also face grief over what we’re leaving behind and anticipation of the unknowns ahead.

• I’m grateful to restart teaching Creative Movement at Clement Arts, especially because Emma will be joining my class for the fall! Please pray that our semester of worship through dance goes well, that we are a blessing to the other dancers in our class, and that Emma thrives as she uses her body to worship.

• Stephen is having some significant Charityvest partnership discussions that could affect what his work life looks like day to day. This is something we are giving back to God daily.

• Emma’s (and our) sleep, as mentioned above.

Resources that have encouraged us lately

• Songs: Trust You In All Things by Pat Barrett and Tim Hughes and Still Waters by Leanna Crawford

• Devotion: “All things work together for good…” by Charles Spurgeon

We’re thankful for…

• Incredible friends who blessed us with their presence, words, and worship on 7/28 at the Night of Worship and who are on this journey with us in one way or another.

• Special friends who have watched our kids and helped us handle both the required medical administrivia and the tough work season that Charityvest is currently in.

Thank you for holding us up. 🤍🙏

In the Deep Hope,

Katie & Stephen