Lots of updates!

Hello! We thought it was high time to send out another update on Kaleb and us.

It's hard to believe, but Kaleb is now 10 months old! He is in a new and wonderful season where we're transitioning him into the next phase of his growth and development. This looks like seeing specialists for less critical areas of concern in his body as well as moving him forward in physical therapy and feeding goals. Here’s a pretty detailed summary of the highlights below, for those who are interested in it:

Neurodevelopment

The most encouraging appointment we've had was with Neurodevelopment. After evaluating Kaleb, his doctor said he's right on track for his age in the areas of speech and social skills. I wasn't too surprised to hear that given how interactive he is, but I was still pleased! He still is pretty far behind in physical, motor, and feeding, which is no surprise given his many extended stays in the hospital, but his existing neurological challenges will make it harder for him to get where he needs to be, so we are working on incorporating more therapies into our week for him so he has the best chances of growing in those areas.

Neurology

We saw neurosurgery this week to review an MRI he had done to check his brain ventricles. Dandy-Walker syndrome can lead to excess fluid in the brain ventricles, a dangerous condition called hydrocephalus, but his doctor said the MRI revealed his fluid levels look even better than the last one, most likely due to the fact that Kaleb has a milder form of Dandy-Walker (only part of his vermis is missing). Because of this, he doesn't suspect that kaleb will have a high risk of developing hydrocephalus.

While there, I also asked him to look at Kaleb's spine which has an odd bulge in his lower back. The doctor took much interest in that. He had an x-ray done and referred us to a spinal orthopedist to investigate if there is spinal curvature and if that is the result of scoliosis. If it's not scoliosis, he suspects kaleb may have a tethered spinal cord, but that will require a sedated MRI to confirm and since sedation and kaleb don’t go well together, they want to cross off all their other options first. I got to see the initial review of the xray and it did confirm some skeletal abnormalities, but we will wait until we talk to the orthopedist next week to find out the specifics.

Kidneys

Our visit to the renal clinic was pretty unnoteworthy. An ultrasound revealed that Kaleb has a few tiny kidney stones in his right kidney, as well as unclear wall linings, and a bright appearance of the kidneys overall. None of these things seemed to be a big deal to the doctor, so she asked us to come back in when he's a year to see if anything has changed or developed.

Feeding

Todd took Kaleb to the airway specialist, PECAN (Pediatric Cardiac Nutrition who focus on his nutrition), and speech language pathologist (who focuses on mouth feeding) while I was gone in Italy. Airway confirmed kaleb has no physical abnormalities in his mouth and throat. PECAN evaluated his current feeding rates and encouraged us to make a couple changes in order to start moving him (hopefully) towards mouth feeding, which he has tolerated well. SLP gave todd some tools to encourage kaleb's hand to mouth skills. All in all, we've come to a really great place with Kaleb's feeding and are hopeful to see him move forward in this area!

Heart

We haven't had a cardiac eval recently but based on how he's been acting he's reached a stable place. I think all of these improvements are mostly due to his simply getting stronger and older.

My Trip to Italy

Todd wins the award for being the most sacrificial and hard-working and kind husband to have watched all of our kids so I could join my parents and siblings in Italy for 10 days. He was served by MANY people in our church in Cambridge as well as from our church in Louisville. We are so deeply grateful. It truly was a revitalizing trip for me and, in consequence, has breathed much fresh life into our home. I feel like a new person. It was spiritually encouraging, artistically inspiring, physically renewing, and relationally refreshing. I could go on and on but I'll spare you the details and instead share a few photos:

One of the highlights was visiting our friends, Rocco and Mady, who are helping plant a church in Turin, Italy. Mady was pregnant with their first child but had been experiencing some complications. In God's providence I was able to visit with her in the hospital and speak words of comfort and faith as she processed the unexpected hospitalization so late in her pregnancy.

This past Tuesday she gave birth to a beautiful little girl, but their baby, upon birth, wasn't breathing and had to be resuscitated and then rushed to a local hospital. The doctors are hopeful that she will be ok, but are still running tests to make sure there wasn't any physical or neurological damage while she was without oxygen. Would you join us in praying for Rocco and Mady and their daughter, Clara?

New Music

One big takeaway from my time away, aside from being reenvisioned to continue tackling the crazy wonderful life God has given me, was a strong sense that now is the time for me to make more music, specifically, an album. I recorded Glory in the Darkest Place almost 10 years ago at a time when I knew without a doubt that that was the next thing God wanted me to do to serve His people (I wouldn't have had the guts to do it otherwise). And this time feels very similar to that. After talking with Todd, we decided I should start directing some time to writing, and the songs are coming together a lot more quickly than I expected!

Tentatively, the album will be called “Held” and will be composed of a number of songs I've written while processing Kaleb being in the hospital, longing to hold him, as well as a number of songs about resting in God's holding us in times of pain. I have a desire to specifically serve parents of children in the hospital through these songs, but I think there will be plenty to serve others as well.

Would you pray for me and this project, that God would cause everything to fall into place (especially a producer and the funds) and that He would give me wisdom to steward this well, while prioritizing care of our family and home? Amazingly, God has been blessing those two things specifically. I've been able to give limited time to writing here and there, incorporating help from my dad and siblings, and He's richly blessing those times with fruitfulness.

Please Pray:

• For Kaleb's interest in food to increase

• For continued growth in strength and skills for Kaleb

• For wisdom, patience, and perseverance for Todd and I in parenting Zion and River

• For God to establish the work of Todd's hands in the church and GCC, and for creativity and wisdom in his work.

• For God to comfort Rocco and Mady as they spend these days without their daughter and for God to preserve Clara's brain and body from any damage from the birth complications.

• For God to bring to fruition this vision for another album, that He would provide everything needed to make it happen, and that He would use it for His glory, specifically to shepherd parents feeling lost in the emotions of having a sick child.