Let’s start this blog with a pretty cool God story.

As you already know we are struggling with insurance battles right now- and those battles still continue. We are waiting on our court hearing and an additional meeting with someone within the state waiver program this week. But in the meantime we have been able to get a grant to help with specialized equipment that insurance does not cover.

In most of the home photos I post of Malachi he is in a blanket covered chair called a “Chill Out Chair”. We purchased this in 2019 and it has been through the ringer. The zippers have broken and the cover is being held on by some snaps I added. A few years ago I priced out a replacement cover from the company and it was $800 so we decided to just rig it up and make it work.

Insurance sees items like these as “comfort items” and therefore “not medically necessary” and does not pay for them, but Malachi’s head is reaching the top of this one and it is getting a little unsteady the longer his body grows. After lots of contemplation we decided to use this year’s grant money to get him the next size up.

I quoted out the new chair online and with all the items he would need the cost was over $4,000. The grant we have for him covers $2,000 but that is still a lot of out of pocket!

I called the company and asked them if they happened to have any demo models, or chairs that have been used at conventions for users to try. The company rep said “actually, I have one demo model we have been talking about selling! It is a size medium.” Which is the size we need for Malachi. I asked her to tell me more about the chair and she went on to list the things it would come with…and unbeknownst to her it was all the EXACT things we had set up on our quote, and even a few more bonus things!

Even the color and fabric of the demo model is the exact one I chose online for the quote.

I was trying to not get my hopes up too high as it sounded too good to be true. I asked her about the cost and her response made me laugh out loud. She said “How about $1,950?”

And all I could think in that moment is Ephesians 3:20 “Now to Him who is able to do immeasurably more than all we ask or imagine according to His power that is at work within us, to Him be glory….”

What a beautiful Ephesians 3:20 moment. To see God not only provide the basics but immeasurably more. So Malachi will get his new comfy chair in about a month and each time we put him in it I will be reminded of God’s faithfulness in even the little things.

Malachi is growing physically and cognitively. The last two weeks we have seen so many smiles and opinions out of him. It has brought me so much encouragement to see him so joyful.

Malachi’s new favorite show is Fear Factor and when he hears the theme song he starts giggling. We start every episode letting each family member choose one boy and one girl they think will win. Malachi won’t vote until everyone else finishes their picks, and he will often sign to choose the ones that no one else chooses. He wants to be different than everyone else.

As we watch the episode I narrate each challenge and his excitement and adrenaline is absolutely amazing. I can’t handle watching the parts where they make contestants eat gross things so we fast forward those, but he is a sucker for all the snake/spider/scorpion challenges. I filmed a little video to share with you so you can see how much he enjoys the drama of it all.

His response time with his signs and his vocalizations has improved so much in the last two months. Last week he signed that I was annoying when I was reciting the lines to the Princess Bride. Stinker.

We spent some time last weekend at the new inclusive park in a nearby town. The boys got to try the zip line, wheelchair accessible merry go round, swings, and a few other fun wheelchair friendly features.

We have been spending a refreshing amount of time together as a family at home, keeping our social calendar pretty empty. It has been a good reset for our family.

Levi’s glasses came in this week and he managed to lose them within 48 hours. But we found them again and all is well.

Levi’s fine motor skills are improving thanks to some pretty amazing teachers. He loves school so much and we are thrilled with the opportunity to find a place that can give him the focused attention that he needs.

Levi turns 6 on Tuesday! And oh what an adventure it has been!

Levi has a love for others that is beautiful to watch. And his love for Malachi brings tears to my eyes often. Lately he has been telling me about his big plan to build a little house for Malachi and him to move into and get our friend to put a ramp on it so he can push Malachi in all by himself. He says they are going to stay up late and watch movies and that I can come and visit.

Then after a few minutes of processing his grand plan he always says “Actually, can we just live here with you guys?” But that boy can dream up a pretty good plan! And Malachi loves listening in on all the schemes.

Levi’s brain amazes me and he can remember details from things that happened years ago. He makes people feel so special with the things he has retained from their past conversations. He is an empath and feels BIG emotions…and I love his big heart.

Life with Levi has been a journey. I met Levi on a camera screen before I got to see him face to face; I had to be put under general anesthesia for his birth. And when I saw this photo my heart fluttered with pride and joy. My eyes saw past all the tubes and wires and saw that healthy, pink skin and peace washed over me.

The first five months we chased miracles, medical interventions, and the best doctors for his unique diagnosis. We walked in fragility, navigating new battles each day.

But that special little boy kept smiling.

Before Levi was born I chose a verse for him.

Numbers 6:24-26 “The Lord bless you and keep you; the Lord make his face shine on you and be gracious to you; the Lord turn his face toward you and give you peace.”

I prayed that Levi would reflect the light of the Lord in his life. And when I look at little Levi’s testimony I can’t help but see the reflection of God’s goodness and love in all the pieces of his story.

This week I am thankful for the many testimonies God has given our family. He has made it easy to share our faith with others and to tell of His greatness.

When we did Levi’s big airway reconstruction at 4 months old we were told that he would never be able to speak. And we mourned greatly over that loss. But God.

And that has been a theme in Levi’s 6 years. But God.

And now that beautiful voice can loudly sing “This is my story, this is my song, praising my Savior all the day long.”

Much love,

Leah