After a two week long on again and off again relationship with supplemental oxygen, Malachi is finally back to zero breathing supports, hallelujah! We weaned him off early in the week only to have to put him back on for a few days. We kept him on the pulse oximeter 24/7 for most of the week but now that he is stable I am back to spot checking him.

I called the hospital and we have moved his pulmonology appointment up by a few months to make sure we have the right supports on board if this becomes a consistent thing for Malachi. All of the machines we are using are actually Levi’s so getting some extra things on board for Malachi is a priority. Especially a cough assist machine to help break up the junk in his lungs when he gets sick.

We headed to the hospital this week for a routine visit with the epileptologist which required a blood draw. I asked him if he could add a CBC to the lab orders to check his white blood cell count and other levels to make sure we weren’t missing something obvious that was causing the oxygen dips, and all of those came back clear. Still a mystery, but I am glad he is back to his normal.

Little Levi seems to have leveled out on the full dose of the seizure medication and is back to his wild self. Along with seizure control, we are noticing some other really great changes! He is able to focus so much better and his vocabulary and ability to speak clearly has changed. His stuttering has also stopped. This is his pure mischief face.

He is going to have to also start routine blood draws so we used some Christmas money for the boys to purchase this “Get Well Center” for imaginative play.



When Malachi had his blood drawn I asked the phlebotomist for some of the non-violent pieces they use for blood draws, like the rubber strip they tie around your upper arm when looking for a vein. We have been doing pretend blood draws in the new pretend doctor office so much that Levi can now complete the whole process on Malachi. I am really hoping this will help prepare him a bit for lab work. I don’t like getting blood drawn either, so I can’t imagine how the mind of a four year old will feel. Poor buddy.

Tomorrow we will head to the dentist which is a pretty major ordeal. Malachi typically gets panicky and with the increased secretions it brings on he ends up having a lot of seizures from a visit. Levi is new to the dentist scene and his PTSD is through the roof. But maybe he will surprise me! I have bribed him with a kids water from Chick Fil A and usually that does the trick.
The puppy dogs turn 1 tomorrow so Jake’s sister brought over her pup from the same litter and we threw a dog birthday party, complete with personalized cake and ice cream. The kids all really enjoyed the excuse for a party and the dogs enjoyed their small slices of cake.


A few months ago God placed it on my heart to start a soccer ministry at our church for the children in our community. I have had people ask me before ”How do you know when God places something on your heart?” and I have been trying to process that answer. How do I put that feeling into words? I don’t know, but I will make an attempt!
Sometimes God places something on my mind and gives me a sense of urgency that it needs to get done. Typically my gut reaction is ”there is no way I could/would want to ever do that!?!” One of the biggest indicators the push is from the Lord is that it always requires a tremendous amount of sacrifice whether it be time, money, or comfort and it isn’t something that I am very eager to do. So my next step is usually denial and procrastination. I am really good at that step.
But that sense of urgency doesn’t go away. And in my quiet time with God He continues to bring the topic to my heart. The scriptures I am led to read affirm that gentle push from God.
I have learned over the last decade that God isn’t looking for perfection, He is simply looking for obedience. Taking that initial step towards the hard things He is calling us to brings a wave of peace into my heart, a peace that is undeniably from the Lord. And usually that first step is the only hard work in the journey. When you are walking in obedience God flings the doors in front of you wide open.
I am not sure who that last paragraph is for, but it is most definitely for someone that is reading this.
The night that Malachi was born I remember laying in the bed at our house, doubled over in pain. I had called the doctor and had been instructed to come in first thing the next morning and I was desperately trying to ignore the feeling in my gut that something was very wrong. I will never forget what happened next. My feet were planted very firmly on the floor and I found myself standing…something I had no intention or strength to do. As my feet firmly planted on the floor I heard the voice of God loudly command me ”Get up and go.” I had heard from the Lord at different points in my life prior to that, but this time was commanding and urgent.
I walked into the kitchen and told Jake “We need to go to the hospital right now.” And out the door we went without another word of hesitation. If you don’t know, later that evening we were transported via ambulance to a hospital with a high level NICU. Within 20 minutes of arriving Malachi’s heart stopped inside me and I was raced to the operating room for an emergency c-section to get his lifeless body out to start CPR. After 15 minutes his heart began to beat.
I will never forget the ”Get up and go.”
This morning our pastor taught from the book of Acts. As I scanned the chapter for context I noticed that phrase over and over again on just the two pages I was looking at. “Get up and go.” I had never noticed this before and it really sparked my curiosity. I spent time today leafing through the book of Acts and noting all of the many times that was the only command that God spoke to so many people….and without wavering they obeyed. Bot knowing the details, not knowing the outcome, but choosing to walk in faith.
And God rewarded their obedience with more opportunities to get up and go. More chances to do His work here on earth. More opportunities to get a firsthand look at His ability to do exceedingly more than we can imagine.
What a beautiful relationship we can have with God if we simply get up and go when He calls us to. So often we allow fear, excuses (yes, even reasonable and justifiable ones), and our lack of self confidence to stay complacent. But oh the growth we can experience in our walk with God when we get up and go. He can lead you into some pretty amazing situations and opportunities.
So if you needed someone to tell you this, here it is: Get up and go. Do that thing that God has been drawing you to for weeks, months, years. Even if it isn’t the right time. It isn’t the right phase of life. It isn’t the safest financial investment. If God is calling you to it, please please please do yourself a faith favor and obey. Take that step of faith and watch God do His thing.
Please join me in prayer as we embark on this new calling. When God calls us to these specific tasks He always seems to work out the details beautifully but we also find ourselves under a stronger attack from the devil. Please pray for our endurance and strength and please pray for a season of health for our family so we can continue to pursue the work God calls us to.
So happy Malachi is doing well and off oxygen. 🙏
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THANK YOU. GOD IS GOOD
MARY
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