Well. It's been a hot minute since I've posted! Too busy living to sit down and type about it. :) I love to chronical everything in my life. It truly helps me process. So here goes!

TODAY is a huge milestone for Azariah. Today is the day that the medical supply company came to retrieve his feeding tube pump!!!!!! He has been feeding-tube free since October. I was JUST having a conversation with his home-nurse (who watches him a day or two a week when I'm in the physical office) about when it would be reasonable for us to send back the feeding tube pump. And, the medical supply company happened to send us a letter yesterday, saying it was time to pick it up! I am 100% comfortable without that tube in our house. In fact, when I was going through stuff for our massive yard-sale last week, I bumped into the feeding tube pump. The kids wanted to turn it on and push the buttons. I usually permit the kids to safely operate certain medical gear, just on/off, etc. So I let them. As soon as I heard that machine turn on, I think it triggered some legit PTSD in me. The sounds, smells, textures. I started feeling panicky, and begged Mordecai to turn it off. I left the room and tried to explain to him why, that just hearing the sounds of it made me so sad. It just took something so small to throw me back to the days when I was FIGHTING WITH EVERYTHING IN ME to save Azariah's life. SO many times! It threw me back to that fight or flight place. Being awake 24/7 every 3 hours a day and all throughout the night to turn off and on the tube, check his PH levels, flush the feeds when they were finished. Just no true rest. The medicine situation-oh my! Our entire counter used to be rows of meds, with their doses and paperwork. And hundreds of syringes we had to constantly wash (again, because we never had access to the amount we truly needed, and had to re-use the fire out of them!). Just the chore of washing syringes for his medications used to be this impossible chore to keep up on. I remember doing it in the middle of the night, sleep-deprived, because we were out and had to have them for the morning meds! Now, he takes ONE daily medication for his heart. One medication every other day (hunger meds). And two daily supplements. SO EASY! 

And then, giving away his feeding tube pump meant all of the supplies and formula we've been holding onto in case of emergency, it was also time for all of that to also go! I cannot tell you how much storage space we now have. At one point, his medical supplies took over half of our spare bedroom and most of the closet. Plus most of my own closet. And tons of space in our kitchen! What a complete JOY it has been finding homes for all of these supplies. For example, the NG feeding tube itself was worth more than gold to us when he was on the tube. Insurance would only cover sending a couple tubes a month, when he would go through more than that in a week! They expected us to "rinse off and re-use" an old, nasty tube that had come out! NASTY! I would never do that. We were so blessed when other families dropped off their spare feeding tube supplies. And now, that is us! Almost running out of supplies so many times had been AWFUL! We were lucky and grateful when at the end of hospital stays, nurses would do their best to stock us up. It was like Christmas every time. Feeding bags were like gold as well. The insurance company, again, only covered a small amount per month, and expected us to rinse out the bags WITH JUST WATER every time. Azariah mostly got breastmilk (and fortified with formula at times). That is NOT cleanable with just water. So, again, gross! Sometimes the bags would burst, leaving us with soppy, smelly, icky messes. And we needed bags! Oh those memories. Once his entire feed bag burst during our church's special celebration dinner. And I was alone, with both kids! What a mess. All over the chair and floor, backpack and his clothes. And ME! It happened so many times in his bed. The feeding tube would come disconnected from the machine, and his crib would be soaked. I don't want to dwell too much here, because those memories are just not fun. BUT I want to praise God He has delivered us from all of that! And we've gotten to encourage another local mom with her baby, Gracie. The baby who's heart stopped for 15 minutes, yet she was brought back to life by the miracle working power of God. She's still on a feeding tube, and just turned one! We believe for the day when she is also feeding tube free. <3 So, back to the supplies...I found the 20 different skin adhesives we had tried cutting and using on Azariah's face to secure the tube. That was like a horror movie. If I posted photos, they would be too graphic. They literally look like horror movie makeup. The tapes would burn his skin (half his whole face!!!), layer by layer, until his skin would ooze and bleed! And then scab! And nothing could stick to that...and because he was in-between heart surgeries, he HAD to have the NG feeding tube. We had no other options. A stomach feeding tube was considered too risky because he was too fragile. So, today, as I was going through the supplies, I found the plastic baggies with the scissors I had used, and the tapes I had cut. And it all flooded back. All of those memories of his pain. Me literally screaming at God, so mad that on top of all of this little baby's hardships, his skin was yet another unbearable struggle. I praise God He met me in that place. The week I began fasting (not  food) and really praying, that was the week we finally sourced the products that actually worked for him. SUCH victory. And it was some of YOU here reading this, who generously and sometimes anonymously found and sent us these products when we couldn't get our hands on them due to backorders and medical supply company's inventories. We are so grateful to our community for every kind gesture, big and small! So today, we gave away the special formula stockpile, I mailed out the spare NG  feeding tubes to a mama of a fellow heart warrior who currently needs them like we did (plus spare tape), and we're soon to hand off the feeding tube backpacks (remember seeing photos of him in those? :)), and various supplies. It has been 8 months of NO FEEDING TUBE. If you're new to following his journey, he had that tube since birth. We inched along on weaning from it, since his last major open-heart surgery at 7 months old. I longed for the day when he wouldn't require it. So many of you stood in the gap and believed God for this breakthrough when my nerves were shot and  didn't have the faith for it. 

This is going to sound like a silly milestone, but I have not changed purses for myself in like 3 years! There was a time in my life where--I kid you not--I changed purses with every single outfit I wore. No joke. And having kids does this-haha! It happened with Mordecai as a baby and I remember posting on social media about a purse-change the day it happened. So Monday, I changed purses and I feel like it's the start of a new season. <3 Just meaningful to me. 

Another not-so-fun milestone today. 15 years ago today, precious friend Meagan Ahlstrom was killed by a DRUNK DRIVER. Don’t do it. If you’re drunk, DO NOT GET BEHIND THE WHEEL. Meagan would still be here today if it wasn’t for someone’s mistake. I remember so much about Meagan. Her laugh, her humor, her beautiful skin! Her gorgeous smile. Her boldness and passion for Christ. Her Bible studies and prayer meetings at school. She worked at Merle Norman Cosmetics just a couple years before I started working there. We shared the same boss. I remember how much she and her little sister, my best friend, used to fight. And then the next second be wearing our cute shades, driving down the road, listening to great music. Making memories. I used to "live" at their house for several days at a time when I was a teeny-bopper. Ha. We had so much fun. And she babysat me before I met her sister. She was the cool babysitter! Such a neat mentor to me. Always so kind to us kids. Our families were all very close from church. Her sister and brother were never the same after she died. Her parents are still grieving. Please, please don’t drive drunk. I wish there was a stigma here in the North about drunk driving. It doesn't seem as evident as in the South. Just don't do it. Think of Meagan!!!! It's not worth it. 

We are working on Azariah's speech, and we're still working with a feeding therapist. :) His heart and pacemaker look good right now, though he will need another open-heart surgery called the Glenn Procedure, at some point. We have been told that will be between the age of 4/6 and early adulthood. His pacemaker will also need new batteries at some point, and that is another surgery. We still use an eye patch for one hour a day. But those are the things we are working on, and looking out for. We are just so grateful he made it past that year-ish marker where he was incredibly fragile. We almost lost him so many times. Now, these days, we only check his levels if he's sick! We once use to check his oxygen saturation levels and heart beat twice per day. I still weigh him once a day, but there was a time when we had to twice a day. It's just this chill, wonderful season compared to the years of constant medical trauma. I am grateful for every second, though. Every second! Because this child who is set apart, he is worth fighting for!!!!! I know I have had to press into God and lean into Him and others more than I have in my whole life. In those places, there is no where to run but to Him. It's so hard to explain. But when facing life or death for my baby, it's been terrifying. Truth really is true in those moments. God and His Power really are real. It's not just words on a page in an ancient  book. We had people all over the world praying for Azariah, and people prayed for ministering angels. I sensed angels with our fragile, delicate baby, as he was fighting in the early days. I sensed angels with me as I tried to rest, alone in the tiny "sleep rooms" in the hospital. God met me in that place. And now, we have this incredible story to share. VICTORY!!!!!!!!!!!!!!!!!!!!!!!!

This season is busy, let me tell you. We could sure use prayers, as you know how hard all we've gone through can be on a family. But let me update you on all of the fun happening! He’s sleeping every night in his brother’s room! Loves it! 

The Lord poured out so much grace on my solo Nashville trip! Praise Jesus! Both kids were little cherubs!!! Azariah only cried two times the whole time I was gone! My dad was so kind to fly me out to another best friend's wedding. But the kids were home with the nurse and my mother-in-law! (Hubby works two jobs and hardly gets to come home to rest. Could use prayers.) I got to help my best childhood friend throw her wedding together! Ha, we hardly slept or ate. I slept on her couch as we were so focused on the wedding! It was such a stunning wedding, and oh so special! And after the wedding, I got to help house-sit for another best friend in Nashville, where my parents were staying. And that home is just gorgeous!!! I literally changed my clothes, makeup, and jewelry just to get tons of photos inside. Ha. It was pamper-city.  I got to enjoy the finest mattress, loveliest antiques, most exquisite atmosphere with food and coffee to boot! The South sure has the Gift of Hospitality! <3 We crammed in seeing SO many loved ones. But I am very sad the trip was only two nights, and I missed seeing a hundred beloveds who we consider family! I pray for the day when we have enough time to make our rounds. My heart is so full after that trip, but it's sad I missed those hugs from people who have helped carry us, despite the miles. I flew home to my sweet kids snuggling me like crazy, and wow am I grateful. Still, 2 nights solo for the first time ever since having 2 kids? Ha! That was very appreciated! :) And in one of my favorite cities, no less. The Lord is so faithful. If someone would have mentioned a trip like that to me even a year ago, I would have laughed in their face. Yet God. He made it possible! Provided the needed grace. 

We try to say YES to everything we can, turning down no invitations! I lived in that hospital long enough to appreciate everything! One weekend, the boys and I went to THREE parties in the same day! Back-to-back, 7.5 hours straight of fun! Oh it was a blast. And the very next morning, we went to the Philadelphia Zoo! It's America's oldest zoo in the country! Over 3,000 from Children's Hospital of Philadelphia for their Fetal Family Reunion! We got to meet three different heart warrior families, and that was such a highlight. One little girl is 7, and she's had the same heart surgeries as Azariah. She is now on a heart transplant list. We are praying for her. She is precious, and such a fighter! Please pray for Lucy! While we're having so much fun, sometimes everything does hit me. We have this seemingly normal life now, but the glimpses of his condition and the reality of his special anatomy. I have to surrender him to the Lord again and again. God is the One who breathed life in his spirit. God is the one who knows the days he has! And we know that Azariah WILL fulfill his destiny! Praise Jesus!

We've got a glorious wedding we're heading to tomorrow, and seeing my work family is always so nice. We had that huge, exhausting yard-sale, and finished up Mordecai's soccer season! Parks, library fun, just so much! We had a crazy day of doctor check ups, and then came home. allergic reactions that then required an urgent trip right back to the doctor office. wild day that day! So many meds, ice packs, eye drops, skin treatments! It was Mordecai for that one! He’s okay now! 
My Nashville fam and friends loaded me up with extravagant clothes, jewelry, and you name it. Some from my late grandmother, and so very special. I've had a blast dolling up, and feeling close to all of them. The Lord dresses me, head to toe. He's so faithful. I love my Southern roots, and try to embrace them every chance I get! I'm sharing this song the Lord gave me, "Secret Place" here because it comforts me. It's not new, and some of the lyrics were a poem by one of my best friends who just got married in Nashville! I have a good number of songs I've been working on. No time to finish or even record them. But something I look forward to! None of the recordings on the YouTube channel are perfect. And that's humbling! But I would rather share them and be obedient. If even one person is touched by a song, totally worth it to me. My prayer is folks can listen, despite the imperfections. 

We continue to seek the Lord for His supernatural guidance, vision, and direction. Thank you, community, for your support and prayers!