We kicked off the week with a day of therapy appointments and a visit with the epileptologist (seizure doc) for Malachi. For any new readers, here is a very basic summary of seizures in the Carroll household.
Levi’s Diagnosis: Complex Partial Epilepsy. Levi has just one seizure type and it is currently being controlled with medication. Our treatment plan is working so we will not be changing the regiment until it stops working so well! Next month will mark one year seizure free with his medications on board.
Malachi’s Diagnoses: Lennox Gastaut Syndrome also known as LGS (multiple seizure types that develop throughout lifetime), and intractable epilepsy meaning his seizures can’t be fully controlled with medication. Malachi’s seizures started around 9 months old and have evolved tremendously since then. He is up to four different seizure types, and we have three controlled right now. But he is still having 4-6 seizures a day, even with three different anti-convulsants on board every morning and evening.
Could we get more seizure control? Possibly. But every time we try to change medications we end up exchanging our interactive Malachi for a sedated one, even after the titration period is up. The reality is that Malachi’s seizures are a symptom of brain damage, and that is something we can’t fix. So much of our decisions for him are filtered through a quality of life flow chart that I have made up in my brain. Sedated, seizure free Malachi is just not a quality life for him.
Right now we are in a content spot. Yes, he is having seizures but we see to be in a safe-ish place with them so we will continue the medication regiment that we are currently on.
Let’s talk honestly for a quick minute…Mom take.
People with LGS are 24 times more likely to die prematurely. Granted, there are lots of factors in that statistic but we are very aware of the gift that each day on earth with Malachi truly is. Statistically seizures are one of the most life threatening things on our radar. So dealing with them daily continually threatens my emotional stability in so many ways.
We packed so much fun into this week! Due to sickness in extended family we ended up staying local for Thanksgiving. We aren’t huge holiday people but like to create memories and cherish our family time with just the four of us. We spent the day riding around on the little truck and smashing our old pumpkins in front of a trail cam to see what animals would come visit.
We also spent lots of time outside playing on the playground and burning some energy.
The day after Thanksgiving we loaded up and headed to the local tree farm! It is run by the family of one of Jake’s former students and they are always so friendly and sweet. You choose and cut your own tree for $25. Both Levi and Malachi were absolutely giddy on the way to pick out a tree.
Malachi has a lot of opinions when it comes to Christmas trees. Jake tried to talk him into a “Blue Ice” tree and Malachi signed no. He signed yes to a very soft needled tree but it was too fat for our space. So after negotiations we settled on a skinny, tall tree.
We brought it home and dressed it up, much to the boy’s delight.
Levi started his basketball league again this week and was eager to get geared up for the game. He was a bit more focused since last year, so that is progress I guess haha. It is still like watching coaches try to herd grasshoppers.
This Thursday kicks off our bedtime revamp. Levi will be starting half day preschool after Christmas so the month of December is dedicated to changing sleep routines. Right now Levi goes to bed between midnight-1am and Malachi goes to bed around 4am (6am on Thanksgiving night). I put Levi to bed late so I can keep both boys on the same wake up time range and try to squeeze in a few hours for myself.
But with preschool starting Malachi and I will need to leave the house to drive Levi to school by 7:30 each morning. I am not convinced I will be able to adjust Malachi’s internal clock, but by golly I am going to try. We are also subsequently going to have to start inching medication times and feed times around so I can medicate Levi before leaving for school each day. We welcome any prayers for a peaceful transition month.
Trust in the Lord and do good; Live in the land and cultivate faithfulness. Delight yourself in the Lord; And He will give you the desires of your heart. Commit your way to the Lord, trust also in Him, and He will do it. He will bring out your righteousness as the light, and your judgment as the noonday. Rest in the Lord and wait patiently for Him;
The amount of beautiful reminders in this verse are absolutely amazing. There is so much simplicity and peace in these verses.
Trust in the Lord and do good: Our calling is to trust God enough to live a Spirit driven life and do good works which He prepared in advance for us to do (Ephesians 2:10)
Live in the land and cultivate faithfulness. Wherever God has placed us, and whatever situation He has placed us in, our focus needs to be on cultivating faithfulness which will then produce the crop (a heart of contentment).
Delight yourself in the Lord; And He will give you the desires of your heart. This isn’t a genie in a bottle type situation. But rather, the more you delight yourself in the Lord the more your heart’s desires will reflect Christ in you. When you are delighting in God and His goodness it strips us of the unhealthy opportunity to delight in ourselves.
Commit your way to the Lord, trust also in Him, and He will do it. Do I do this enough? Commit my ways to God with complete confidence and trust?
But those final words are the kicker for me this week…
Rest in the Lord and wait patiently for Him. What does “resting in the Lord” look like? I think that answer is going to be different for each of us, but I can admit to you that I do not do this nearly as much as I should. But also being honest….resting in the Lord feels like maybe exactly what I am craving right now.
We are being asked as a family to wait patiently for so many things…healings, bodies, psychological wounds. Patience has been a personal conviction of mine, and one God continues to press me on over and over again in His Word.
I had to erase a whole paragraph because it looked like jibberish from my jumbled brain. And I have fallen asleep staring at the screen at least 5 times now. I really, really want to write a better devotional for you all but my brain is not cooperating. I thank you all for taking the time to check in on our family and for keeping us in your prayers.