The leaves are changing here in Tennessee and I find myself thanking God multiple times a day for the beauty of Octobers.
Our soccer season has ended, and our family takes a brief break each year from soccer seasons until January. We have re-started our family game nights, cooking more meals, and a new book series with the boys at night. Our family truly enjoys coaching soccer, but slowing down is always a gift.
Malachi had some pretty big appointments last week. We were able to have a productive conversation with his Urologist and come up with a plan for his urinary retention issues since the medications are not working.
In the next few weeks he will head to the operating room to start Botox injections in the urethral sphincter, the muscle that controls the release of urine from the bladder. He will have to repeat this procedure under general anesthesia every 3-6 months indefinitely.
Jake and I are honestly a little discouraged by this treatment plan. We have always avoided treatment plans that require him going under every few months. But doing nothing will lead to kidney failure so we are walking forward in faith and hoping this works. If it does not we will need to start considering catheterizations which can come with complications and lifestyle changes for Malachi.
We ended up canceling his MRI as his seizures leveled out when his body adjusted to the new medications. There seemed to be a little miscommunication between Neurosurgery and Neurology regarding the type of imaging and whether or not the machine was safe with his new back hardware. I was a bit anxious with all the back and forth and felt like we were stable enough to cancel it.
I meet with the Psychologist who tested Levi in the morning to discuss his results and I am very curious what she will have to share. Labels and diagnoses don’t bother our family. Each of our children are a puzzle and each time we get another piece it helps us organize the best path for them.
Levi is thriving in school and his history and science recall is so impressive! He is a hard worker and we are so proud of how well he is learning to love others.
The monkeys absolutely love him- we suspect they see him as one of them and play with him like he is a blonde headed monkey.
And Malachi is very entertained by all the monkey madness.
Each year our friend open their farm to the community for their annual “Holy Ghost Wiener Roast”. This event, all food, and all activities are offered for free and we partner with a local church to help bring the Gospel to the forefront of the event. The first year we just invited our youth group and had about 75 teens. The next year we asked the youth to bring friends and family and had 300 come out. The third year we opened it up to the community and our numbers have continued to grow each year. Last Saturday we had over 1,750 people on the farm!! So wild and so much fun!
This weekend the time changed. This can be a little tricky for medically complex families as we lean heavily on routines and medication schedules. There is a little wiggle room with med administration by an hour or so but we try to keep things as smooth as possible when the clocks change.
Today as I went through our routine I caught myself wondering if other parents have to be as time aware as we are.
While each day is very different than the last, here are the constants we have to keep track of on a healthy day….this may be absolutely boring to you but it gives you a glimpse into our medical world.
8:00am Levi medications round #1
8:15am Diaper Change #1
8:30am Malachi medications round #1 with g-tube feed
9:00am Malachi breathing treatment
9:15am Malachi Airway Clearance System CPT Vest
9:30am Cough Assist Machine
(Above breathing regiment is repeated up to 3x per day when needed)
10:30am Malachi medications round #2
11:15am Diaper Change #2; g-tube feed
3:15pm Diaper Change #3; g-tube feed
7:15 Diaper Change #4
8:00pm Levi medications #2
8:30pm Malachi medications round #3; g-tube feed
9:30pm Hook up and start Levi’s g-tube nighttime feed
10:30pm Malachi medications round #4
11:15pm Diaper Change #5; g-tube feed
11:30pm Stop and unhook Levi’s g-tube nighttime feed
In addition to this, we give Malachi water through his g-tube at least 4 times a day and vent him dozens of times, letting any trapped air out of his belly.
Levi sleeps from 9p-7a and Malachi varies but right now he sleeps from 2a-8a. Each day tends to float into the next and the mental energy it takes to stay on schedule can be overwhelming. Especially on appointment days when we don’t have our home base to work out of. Leaving the house requires significant planning and thinking through worst case scenarios. And traveling overnight anywhere….whew….it is a whole lot of packing and planning.
But for us, this has become normal and just a part of life. I feel like I could draw up meds correctly with my eyes shut haha! Right now I administer 23 different doses of medications each day- cleaning the syringes is it’s own job.
This life definitely doesn’t match the visions of motherhood I had as a girl, but it does carry so much beauty in it.
This weekend we had the opportunity to speak to a local youth group, and as I prepared for what the Lord wanted me to share it reignited such a love I have for sharing our story and God’s role in it to others. We aren’t perfect and we most definitely have not displayed God’s character in every chapter of our story, but the lessons we have learned in each leg of the journey have been so life changing.
As I prayed about what to share with these teens specifically I started digging deep into my past, asking myself what is something teenager Leah needed to hear at that age. And comically enough, it is the same thing adult Leah sometimes needs to hear these days.
I saw an object lesson at a women’s conference that really stuck with me that involved paint samples. The more I thought about the visual the more it resonated with me.
This weekend I had 5 teens come up front and handed each of them a paint sample from the hardware store. They had to secretly look at their sample and decide what color it was; on the count of three each person had to say their color out loud. What they didn’t know was that every sample was white, and even had the word “white” in its name.
As you can see, every single one is a different “shade” of white.
I talked about faith and how, too often, we look to other Christians to determine what faith looks like. We find people in our world that we admire and use them as our standard of Christ. But even the greatest Christian is still an imperfect version of the perfect nature of God. The “Ultra White” sample represents God’s perfect holiness….and a visual of how far off even our best imitations can be.
It isn’t wrong to admire others, but it is important that we KNOW the true God and His character firsthand.
In my life my biggest wounds have come from other sisters-in-Christ. And I am sure that I have been a source of pain for others, as we all have moments where we allow our sin nature to overshadow our reflection of Him. When we do things “in the name of Christ” and allow our flesh to be involved we can do so much damage to our witness.
It is vital that we be “washed in the Word” (Ephesians 5:26) and have eyes that can spot when our feet need to be cleaned (John 13:5-10).
It is always a blessing getting the chance to share with groups. And the opportunity for self-reflection with the Holy Spirit is always a refining experience.
Well, according to my handy schedule typed above, it is time for me to get Malachi to bed! Thank you for listening to my updates and allowing me to ramble. Having a safe space to process and unload my brain is something I do not take for granted, and I am thankful that we have a support system that cares enough to check in on our family.
Sincerely,
Leah