Happy Summer, family and friends!

It’s the best time of year (for me personally), and we hope you’re enjoying it as well. Thanks for checking in on how we’re doing and how you can pray. We are so very grateful. Always.

Update on Emma: How is She?

We are beyond grateful to report that Em is better than ever! She’s meeting her physical therapy goals, stringing together longer and more complex “sentences” (or at least verbalizing her ideas), and she’s still loving life. We are beyond grateful and soaking up every moment. She’s an absolute fish at the pool, loves to dance and play with James and Annie, and her favorite phrase is “otay, dude!” (Thanks, Bluey 😂)

We’re still working to minimize her brief absence seizures; she’s having a dozen or more each hour. Determining what maximizes her quality of life is difficult on this front as most of the medications come with significant side effects. We’d be grateful for prayer.

She’s also started feeding therapy in rotation with her speech therapy to help strengthen and maintain her swallowing as long as possible. We’re on the waitlist to get back into OT when there’s a new therapist available. PT is still going super strong with our incredible Ms. Courtney. So thankful!

Sleep is a continuing saga of unpredictable not-quite-enough-ness…thanks for continuing to pray!

What’s Next for Emma: Enzymes for Her Eyes

Our biggest next step in Emma’s care is to pursue the possibility of receiving enzyme replacement therapy (ERT) for her eyes. The infusions she’s having into her brain are clearly helping her immensely. Trials are just ending to determine whether infusing those same enzymes into the retina will preserve vision, and the results are promising! We are meeting with CHOA ophthalmology on 8/1 to establish a roadmap toward Emma adding this retinal infusion to her ERT.

What’s Next For Our Family: A Childcare Change

If you’ve been with our family in person at all this year, you’ve probably had the privilege of meeting Leila, our au pair from South Africa, and you already know what a gift her presence has been. We’ve been able to get back into some life-giving rhythms with her help, and we are close to reaching sustainability with our new normal. We are forever grateful!

Over the last few months we have all been discerning what the Lord has in store for us beyond our initial 6-month contract through the au pair agency, as it was always Leila’s intention to pursue something outside of the au pair program at the end of our time together. During that process, we found ourselves in a growing friendship with Deacon, a member of our church, who was about to complete the two-year graduate program at Impact360. While Leila was still pursuing plans elsewhere for the end of summer, the Lord made it clear that Deacon would be an incredible next partner in our unique family discipleship season. The kids know and love her well from church, and our hearts align on many levels. We’re excited to welcome her into our family at the end of July!

That being said, we are grateful for the opportunity to know and love Leila, and we are eager to see what the Lord has in store for her next. In just the last month she’s decided to extend her au pair visa one more time and will be staying nearby with a new family until January. ❤️ 

Reflecting on One Year of Infusions

As we left Emma’s 27th infusion on July 3, exactly one year since her first infusion on July 3, 2024, the enormity of completing her first year dawned on me. I cannot believe we made it this far…

• 27 infusions

• 27 days spent in the hospital

• 5,130 miles driven

• 5+ cumulative days spent in the car commuting

• 270 mLs of man-made enzyme

• 13 outstanding humans made sure we NEVER went alone

• 15 friends delivered lunch to the hospital and so many more sponsored tasty food with gift cards

• Emma is jumping higher, running stronger, talking more clearly, and smiling brighter. PRAISE GOD!

It’s unreal to me, and I am so incredibly grateful. Never in my wildest dreams did I imagine, as we wept on the couch learning Emma’s diagnosis and what treatment would entail, that I’d take her to Atlanta for treatment 27 times without a single solo trip. The time and resources and joy these loved ones have given are remarkable. I love how the nurses come in curious to know who is with me next and where our lunch is coming from. Thank you to everyone who has participated personally and who has prayed us through this year. You’ve been “Jesus with skin on” over and over and over again. (And yes, we’ve quoted you in real time at CHOA, Pastor Keith!)

Thank You, Lord, for these gifts.

Some Summer Highlights, Just for Fun

After our first year of “real” school, it’s been such a blast and a blessing to have everyone home again for the summer. Emma loves playing all day with her big besties. June was busy, but we’re enjoying a slow-down in July. Here are a few photos of our favorite things so far.

Prayer Requests

• For Emma’s absence seizures to abate and/or navigating potential additional medication changes.

• For her path to ocular Ezyme Replacement Therapy.

• For her continued relationship with nighttime sleep to be whole and healthy. 🙃

• For our transition from hosting Leila to welcoming Deacon.

• For rich family memories.

• For my sprained right wrist to heal ASAP.

Resources We’re Loving

• 2 Kings: A Closer Walk by Fred Smith (article)

• Theo of Golden by Allen Levi (novel)

• Create Anyway by Ashlee Gadd (nonfiction)

• The Ache by Lindsey Arcaro & Jesus Culture (song)

As always, please feel free to respond to this email and let us know how you’re doing and how we can pray for you. I’m trying very hard to get better at correspondence, but please know that your messages always mean so much.

We love you dearly.

but Jesus loves you most,
Katie