I am going to informally nickname this month as “Medical Mode March”. We are navigating a few significant things:
- Malachi’s new Katie Beckett part A waiver program; this is a wonderful program for our family and comes with secondary insurance. We have been navigating through the new enrollment meetings and paperwork over the last two weeks.
- Malachi’s lapse in secondary insurance coverage; for about a month and a half Malachi was without secondary coverage. The bills have started to pour in and the amounts would absolutely shock you. All of the machines that we require for his health (cough assist, oxygen concentrator, shaky vest, etc) are rented monthly. Just for a frame of reference, the state waiver program ran their calculations and have determined with their fancy formulas that Malachi’s level of care AFTER primary insurance pays is $189,375 per year. Thankfully we were on a different waiver with Katie Beckett (part B) for the 1.5 months without secondary insurance so I *think* we will be able to get reimbursed for many of these bills from the lapse, but the process for those is a bit complex to navigate.
- Just to add to the fun, the state changed Levi’s secondary insurance to a different company. That means we have to update all therapists, medical suppliers, specialists, and pharmacies with the change and then they all need to get new prior authorizations to refill medications and supplies. We also have to do with for all of Malachi’s too. I know that sounds complicated, so let me present our current scenario. Levi uses one feeding pump bag a night for his high calorie formula. These are not able to be re-used and since it is a prescription for these feeding supplies we can only refill our 30-day supply about a week in advance. Because they switched his insurance the company can’t send the refill until the new insurance approves it (a multiple day process) and then ship it out (another multiple day process). So we now have the stress of trying to figure out how to manage the days without the necessary supplies to feed him.
Each day is spent on the phone and computer trying to navigate all of these changes and get the boys the things they need to get through another 24 hours. This is a world that I never knew existed, and frankly it is a very polluted and discouraging system.
In addition to the behind the scenes paperwork troubles above, Malachi’s seizures have been relentless lately. We met with his epileptologist last week to try to work on some medication changes. We have made some pretty drastic changes which affect his mood and disposition. We usually have to give him a few weeks to settle into medication adjustments before we can determine if the personality changes we see are long lasting and we need to go back to the starting spot and try different changes. We want Malachi to have a quality life; if we overmedicate to reduce seizures that is not quality. But if we under-medicate and he seizes all day that is not quality of life either.
In many of the photos that I post today you will probably notice the mood changes on his sweet little face. But Malachi is doing an exceptional job communicating these days and letting us know when things are bothering him. We just aren’t getting as many smiles as we are used to from him.
I am trying (and often failing) and trying to not get cynical and bitter towards the medical world right now.
A few months ago we were gifted a very generous one-week stay in a Wyndham resort by some dear friends. We rarely take family vacations so we have been contemplating where and when to use the free week. But then it hit us! When Malachi received his Make-A-Wish to Give Kids the World Village it came with something called a passport that gives our family free admission into several places all over the country for one year out from the wish. We looked at the list and noticed that Pigeon Forge/Gatlinburg has several places that will give all four of us free tickets. Malachi’s passport expires in May so we decided to take a family trip over spring break and hopefully get a much needed break away from the stress we have been navigating.
I have been letting Malachi choose the activities during our late night talks and oh boy, is he pumped! It has been a really good distraction for us!
Side note- after all of the hoops we have been trying to leap through lately the unexpected generosity of these organizations to our family has made me emotional. The gesture of trying to help our family is overwhelming.
In other news…
Our kids indoor soccer league ended yesterday and what a fun season it was for all, including my crew!
The boys both love the busyness of the season and Jake and I love getting to coach a different demographic of players. High school players are great, but teaching young children the sport is so different and fun. And having the freedom to speak openly with them about God was such a blessing for all of us. Now that the season has ended we will focus fully on the high school boys season.
The boys and I had a day of medical appointments in Chattanooga last week so we took the in-between time to visit the aquarium! We have been several times with Malachi but the last time we tried to take Levi he was too young and disinterested to justify doing it again anytime soon. But this year he was wild eyed with excitement and jumping up and down. His energy was so sweet.
We did get a few smiles this week from Malachi!
And plenty of smiles from little Levi. We have been encouraging him to dress himself, so ignore the backwards and the mismatched haha.
Levi has been dealing with some pretty big emotions lately and has been having some anxiety surrounding Malachi. This is one of the underbelly sides of parenting medically complex children- trying (and often failing) at masking worry and stress from the kids. Malachi’s seizure changes have caused me to be a little concerned and that seems to be flowing toward Levi accidentally.
When I get up on weekday mornings to get Levi ready for school Malachi is usually past his nighttime seizures and into a deep REM sleep so I will leave him in the bed for a few minutes while I pack Levi’s lunch. It is the only three minutes in our day that Malachi is left somewhere out of my sight! So Levi will often sneak into the bedroom to lay next to Malachi and say good morning. This week he came running out of the bedroom to tell me that “Malachi was sleeping more quietly than normal and he might have stopped breathing.” Hearing those words come from my 6 year old’s mouth was hard, but seeing the panic on his face was even harder. I ran in there to find Malachi still sleeping soundly. But the anxiety that Levi developed in that moment was a much needed reminder to me that I need to do a better job helping him with big emotions, particularly worry and fear.
Their relationship is so sweet, especially as Levi gets older. When I ask Malachi a question about what HE would like to do when we are voting on a family decision Levi will run over and grab Malachi’s hand to make him sign yes to the option Levi wants. In Levi’s eyes he is very good at being sneaky. And Malachi loves the banter, oftentimes signing yes with a sly grin to the opposite of what Levi wants to do just to mess with him. They are such a funny duo.
Psalm 90:17 “May the favor of the Lord our God rest on us; establish the work of our hands for us- yes, establish the work of our hands.”
There are so many areas in my life right now that this verse can be prayed over.
- Parenting
- Navigating medical decisions
- Ministry opportunities that we are called to come alongside
- Personal relationships and our marriage
- So. Many. Decisions.
My prayer this month has been for God to establish our steps as a family. That we wouldn’t have to guess if we are walking within His plan for us, but rather we would feel His guidance every step of the way.
Sincerely,
Leah
