Life Is a Freight Train!

*** For some reason a lot of you didn’t receive this email we sent out last week, so we’re resending! Both the fall festival and the conference went wonderfully! ***

Life is happening at warp speed, but we didn’t want to miss the opportunity to say THANK YOU to everyone who prayed for us to remain healthy so Kaleb could have his swallow study and CT scan at the end of October!! God was gracious to keep us sickness free the whole month and Kaleb participated in both appointments. 

Swallow Study

Kaleb did SO well in his swallow study (consisting of sitting in a chair in front of an x-ray that takes continuous imaging and eating food and liquids of various consistencies which have barium mixed in, so they can see where the food goes when he swallows). 

• Kaleb PASSED for eating purees! This means we are clear to feed him food of a puree consistency, as well as dissolvable solids (like puffs, teething sticks, etc)

• Kaleb is still sketchy on the liquid front. They tried moderately thickened liquids but the X-ray showed he aspirated those, so we’ll need to hold off on giving him liquids to avoid the possibility of pneumonia. 

• We just got matched up with a Speech Language Pathologist in Early Intervention who will begin meeting with me and Kaleb weekly to give guidance on feeding. 

• I asked the SLP at the swallow study for her thoughts on what could be causing his continued aspiration. She said it could possibly be a combination of something neurological and the natural delay that comes from being tube fed from birth. What’s encouraging about this is there’s a possibility that he may be able to grow out of it–which is why we pursuing all the SLP help we can get! He’s already made amazing strides with eating, so we’ll see what more exposure and practice does!

CT SCAN

I won’t meet with Pulmonology for a couple weeks, but in talking with Kaleb’s amazing pediatrician, she said the report made clear there’s no evidence of interstitial lung disease and that most likely his poor lung condition has to do with his chronic aspiration. This is good news as ILD is very difficult to treat. Again, we’ll hear pulm’s official diagnosis soon. Right now, he’s doing very well as far as his oxygen is concerned. All his playing, therapy, and rolling around on the ground has truly made him stronger! I’m amazed when I pick him up in the morning and he sits up straight where he used to have a curve in his spine! 

A Crazy Week

With the amount of doctors and therapists that are seeing Kaleb, some weeks end up looking like 1-2 appointments every day of the week, making the grand total of 9 appointments this wekek! Coming off of Daylight Savings, which hit us all pretty hard, and as Todd is beginning to show signs of sickness on one of the busiest work weeks of his year, we would really appreciate prayer for strength, health, peace, and joy this week! 

Our Next Adventure

In two weeks we will be venturing on a grand adventure! Lord-willing, we will be joining the rest of the pastoral staff of Trinity and their families for the Sovereign Grace Pastors Conference! We are excited about the team-building (we’re staying at an AirBnB together) and memory making, seeing so many old friends.

Directly following the conference, we will fly to Louisville to spend the week with my family, as most of my siblings will be coming into town for Thanksgiving. My mom has recently been having excruciating back pain, which her doctors believe is the first evidence of cancer, so we’re really looking forward to being able to spend more time caring for her and my dad. While in Louisville, we’ll most likely also make a trek over to Evansville to see Todd’s family. 

All this travel is wonderfully exciting and terribly daunting. Packing logistics aside, we are very sobered by the complicated reality of taking Kaleb anywhere. We’re always holding everything loosely and are praying a lot. I worked with Kaleb’s pediatrician to create a letter for the Emergency Department if he were to need to be admitted anywhere, which spells out everything they need to know about caring for Kaleb, including a page number to his cardiology team. We are so well cared for by Kaleb’s team at Boston Children’s. They truly are the best. We’re working on researching the best hospitals in each location, making an emergency plan, and lining up an inexpensive oxygen source in each location (if you live near Orlando, FL and have an oxygen tank we could borrow for 5 days let us know!). We both think this trip is very important and will be very beneficial, so we’re willing to do the work and trust the Lord with the risks, but all the more, we covet your prayers! 

Please pray for us: 

• That Kaleb would improve in his oral feeding interest and skills

• That God would keep us from getting sick, especially Kaleb

• For wisdom for Kaleb’s pulmonology team to know the best way forward for caring for Kaleb’s lungs

• For perseverance, peace, joy, strength, and health this week/month

• For creative wisdom for me as I seek to manage my time and our home, particularly for creative ways to involve or care for Zion and River during the times I need to focus on Kaleb’s care and therapy.

• For much fruit to come from the Fall Festival and Extraordinary Conference

We are so grateful for you all!!!

“God will empty out all that thou hast before He will put His own into thee; He will first clean out thy granaries before He will fill them with the finest of the wheat. The river of God is full of water; but not one drop of it flows from earthly springs. God will have no strength used in His battles but the strength which He Himself imparts. Are you mourning over your own weakness? Take courage, for there must be a consciousness of weakness before the Lord will give thee victory. Your emptiness is but the preparation for your being filled, and your casting down is but the making ready for your lifting up.” - Charles Spurgeon