I had every intention of posting this update on Sunday evening per my routine, but life definitely didn’t allow me to finish the post. The meme above seemed appropriate as I definitely feel “understaffed” and unqualified most days!

Now on to the update: Truthfully this update is so boring that it has me considering whether or not I need to go to monthly updates instead of twice a month. Life has slowed down so beautifully for us and a lack of medical updates is such a sincere blessing. Something I will be praying about!

We are still seeing all of the specialists, running to and from therapies, and dealing with the never-ending phone calls and refills. But that has become so routine that it almost feels normal. I am continuing to try to establish a rhythm for our life but that is hard to do with epilepsy. Each day is unpredictably its own.

Malachi officially lost his secondary insurance coverage. We are in limbo trying to get him onto the Katie Beckett waiver Part A program through the state but we are currently without. Right before we were booted we were able to tap into some waiver funding and purchase a batch of much needed items for him, including a new bath chair.

After seeing him in the new one I couldn’t believe that we were still safely functioning in the old one. Insurance likes to deny bath chairs by saying they are “not medically necessary” and “a comfort item” so being able to use waiver funding to get the $4,500 bath chair was huge!

Malachi will be 11 in just a few weeks and with the change in age comes a change in hormones and a change in routines. He is starting to develop acne and needs showers more often, so the timing of the chair was perfect. We were able to order it and receive it within 3 weeks. Had we had to work through insurance red tape, and had we gotten the approval, it would have taken at least 4 months to get.

We have had some very cold weather here in Tennessee so the four of us have been enjoying staying in and spending time as a family. We have played all kinds of games, created science experiments, and enjoyed the extended break from school.

Last week a very sweet family member passed away and the kids and I went to Ohio for the funeral and to spend time with family.

We tried to time the drive in between snow storms and the bitter cold of Ohio was hard on Malachi. Levi, on the other hand, was surprised by the opportunity to play in legitimate snow.

The temperatures were bitterly cold and I didn’t feel like it was wise to take Malachi outside more than necessary. The sudden cold from getting out of the van to go into a building was setting off his seizures and I was afraid if his body temperature lowered too much we would struggle to get it back. Whenever we are far from our home equipment I am a little more conservative with my choices.

These moments are hard for him and hard for me. I want so badly to give him the same experiences as other children his age, but often we run into things aren’t inclusive, accessible, or in his best interest. He gets his feelings hurt and no amount of explaining helps ease that pain. My heart hurts with his when he is missing out. But Malachi did enjoy spending time with family.

When we travel with Malachi he does pretty decent for a few days, then starts to decline due to routine changes. For example, he rides in the car for longer spells than normal and it is hard to help vent his stomach to release any pressure. If that air stays inside of him he has some pretty major seizures, and his wheelchair isn’t the best seat for helping with this issue. So usually by day 3 of traveling we see an increase in seizure activity and general tolerance and this trip was no exception.

We cause quite the ruckus when we visit my grandmother in the nursing home!

We drove back to Tennessee late Monday evening and are working to settle back into our routines.

Personally speaking, I am experiencing a bit of an identity shift in life. We have experienced some pretty significant losses of our “normal”. We are trying to figure out what church looks like outside of the youth group and where we fit into that. Each week I would read my Bible with eyes to see and ears to hear things that God may want me to share with the teens that week. Now when I read I am seeing so many things I am excited about and don’t have others to share it with. I have been struggling with feeling isolated as I try to figure out how to hang around adult people successfully and build biblical Christian community.

But even though change is hard, I trust that my discomfort can lead to some great dependency opportunities for God and I.

At the start of the new year I jumped on board with the Bible Recap, a chronological study of the Bible that tackles the entire Bible in one calendar year. Each day I read a few chapters of God’s Word and there is a podcast that goes with the free Bible reading plan, but truthfully the scriptures alone can do all the talking!

I have so many amazing things that God has shown me through the first three weeks of this study! If you aren’t already reading God’s Word daily I encourage you to jump on the bandwagon with me, following the scripture reading guide.

I have been praying about which one to share with you and here is what God is laying on my heart:

Genesis 17:1 “When Abram was ninety-nine years old, the Lord appeared to him and said, ‘I am God Almighty; walk before me faithfully and be blameless.’”

I have thought about the two adjectives in this verse a whole lot.

Walk before me faithfully. Walk with steadfastness and loyalty. I would venture to say that most people have similar but not exact definitions of what walking faithfully really looks like. Faithful is going to look a little bit different for each walker, and the personal calls and convictions of God to each will be slightly different.

Be blameless. This one scares me a bit, as I know I fail often at this command. There are so many times I break God’s heart with my sinful nature and choices. So why would God call Abram to do something He knew Abram wouldn’t be able to do?

God’s desire and standard for each of us is perfection and blamelessness. In Matthew 5 Jesus says “Be perfect, therefore, as your Heavenly Father is perfect.”

But perfection just isn’t possible. Sin wages war against our soul. As one author puts it, there are sins of commission (doing things we shouldn’t do) and sins of omission (not doing things that we should). We can avoid sinful decisions and actions but that root still continually exists deep within our hearts.

God knows this, and offers His grace to His undeserving children. But He desires a relationship with each of us where we are continually reflecting Him and striving to avoid an accusation of wrongdoing.

As you read through Genesis you see evidence over and over again that Abram/Abraham did not live a blameless life. In fact, he struggled often with very poor choices, like lying about his wife. But then there are these moments of beautiful faith, like Genesis 15 where is says “Abram believed the Lord, and he credited to him as righteousness.”

Just like Abram, I am a work in progress. Too often I make concessions for my sin, even comparing it to the sins of others and quantifying it as “not that bad”. But God’s desire for me, His daughter, is a blameless life.

And because of my deep love for the Father I will happily take on that challenge. His expectation for perfection isn’t a punishment, but rather a call to a deeper relationship as we lean on Him in our inadequacies.

Please continue to pray for my boys and for us as their parents. Navigating parenting is proving to be a greater task than I imagined when I was younger! And pray peace over our hearts.

Much love, L

Leah

Christmas Day came and we thoroughly enjoyed spending it together in the comfort of our home!

Levi woke up with a head cold and was feeling off most of the day; when Levi gets sick we know it is just a matter of time before the germs hit Malachi. Sure enough by Thursday it had also hit Malachi and he tanked pretty quickly, requiring supplemental oxygen right away. We also started his respiratory regiment (nebulizer, cough assist machine, and CPT shaky vest) to try to prevent a trip to the doctor or hospital. We always run the risk of him picking up something worse on visits to the doctor.

After 12 long days, today was Malachi’s first day being able to sustain a whole day off oxygen!

Levi bounced back pretty quickly and we were able to sneak away from the house and do some fun things close by with family!

Truthfully, this Christmas break has been one of the most carefree ones we have ever had! Yes, both boys were sick but we were able to stay home and just spend time together as a family. And the simplicity was such a gift.

Having Jake home was also a huge blessing, allowing me to catch up on paperwork and phone calls with our insurance battle. Still no final resolution but we are close.

One of the programs we are trying to get as a replacement for the insurance he is losing has some pretty high qualifications to get approved. You have to be able to meet “institutional level care”, meaning that Malachi has to qualify for care that requires skilled nursing services in a hospital or residential institution. This qualification is actually really hard to get, even for a child that shares many of his diagnoses.

This program is our “Hail Mary” play, one final desperate attempt to get secondary coverage for Malachi to cover the things that his primary does not. We have had several zoom meetings, and met with a third party evaluator and we finally received a letter that he qualifies for institutional level care. Jake and I read the letter and high-fived each other, overjoyed for this small victory.

But when I finally sat down to really process it stung a little bit and didn’t feel like much of a win. We focus on what Malachi CAN do, so these last few months of focusing on all of his deficits have been mentally and emotionally challenging.

We still have several papers to complete to make it to the next step but it seems our backup plans may be fruitful.

Changing gears to share a cool story…

Last week I had an appointment with a new ENT and in our conversation the topic of Levi’s airway came up. The doctors eyes lit up and he shared that he did his residency at Vanderbilt and asked if Levi was a patient there. I told him that we transferred him to Cincinnati for an experimental procedure called the Anterior Posterior Cricoid Split (the first experimental surgery we tried on Levi). He excitedly told me that he had done several of those on children at Vanderbilt with the same condition as Levi (bilateral vocal cord paralysis).

I smiled and said “I bet it was after January 2018!” He thought about it and said “Yes, it was later that year that we started doing those!”

Back in December 2017 we were desperate for solutions for Levi’s condition that didn’t involve a trach. In our intense research we found an article about this new procedure that Cincinnati Children’s Hospital was doing for kids like Levi and talked with the surgeons there who were very excited to take on Levi’s case. At this point they had done 19 of these surgeries.

Our secondary insurance said that they would only cover the transport and surgery if it wasn’t one available anywhere in the state of Tennessee. So the phone calls began to prove that no one in the state was offering this surgical option. We had to call all of the big hospitals in the state.

Our Chattanooga pulmonologist called Vanderbilt and asked about the procedure. The Vanderbilt doctor was intrigued and read the article we had found. He replied “No, but we are going to doing them now. Send him over.”

I panicked. I wanted Levi to have the procedure done, but I didn’t want him to be the first one at a hospital who had never done it. But without the Vanderbilt surgeon explicitly saying “No we do not offer this” we would not be able to get the transport to Cincinnati and the subsequent care covered. We asked the Chattanooga doctor if he could call back again and the Vanderbilt surgeon finally begrudgingly agreed saying “I will tell you no this time, but if you call tomorrow with another patient then I will tell you that yes, we do offer this procedure.”

So fast forward to my appointment with this ENT. To hear him say that they had done several of these on children with Levi’s condition starting in 2018 made my heart leap for joy. Yes, they very likely could have found this article on their own and started offering them for a reason other than us. But being able to be a part of the process towards OPTIONS in Tennessee for children other than a trach is absolutely amazing. I think about the hope that experimental procedure offered us during some dark days. Being able to share that hope with other parents is special.

I don’t even know where to begin with a devotional thought tonight. The amount of God moments from the last 14 days is completely overwhelming, and to share those stories with you just doesn’t feel appropriate as they involve so many others outside of our family. We have seen and experienced God’s provision, protection, guidance, and love. We have watched Him make a feast with 5 loaves and 2 fishes. And we have seen Him be glorified within incredible suffering around us.

This week I am treasuring those moments in my heart, and thankful for a God who allows me to witness His goodness.

And finally, here is a video of Malachi from this morning; it was his first oxygen free morning in a very long time and his sweet giggles brought me joy; I hope it does the same for you.

Much love,

Leah