Let’s play the high/low game to summarize our week!
High- Malachi finally got his new wheelchair! New equipment is a big deal for special needs families because it signifies VICTORY with the insurance brick wall. We started this process in early July and his shiny blue wheelchair made it to the house on Wednesday. Wheelchairs are designed to last 4-5 years per insurance. His green one lasted 5 years and it was nice to get something updated, fresh, and clean.
To be completely honest, new equipment brews strange emotional turmoil within me. Malachi was very excited about his new chair and we talked about all the fun ways we could dress the chair up and make it amazing. He was very opinionated that it was to be a Spiderman chair, and was mildly intrigued with maybe making it a Superman chair every now and then. But he also indicated it was most definitely never to be a Captain America chair…not quite sure what all that hate is about.
The mom cheerleader in me talks to him about all the amazing features on the chair, and how big he looks in it. I brag about how everyone won’t recognize him in this new, amazing chair because it is such a big boy chair. I also rally Levi up to help share the excitement, letting him push Malachi around super fast in the house like a superhero.
But stuffed deep down within me is so much grieving over the new chair. It signifies a lack of our miracle. It represents growth, but that growth represents more complicated medical issues as we near puberty. It serves as a reminder that the bigger Malachi gets the harder care will be for him.
We are so thankful for medical devices like wheelchairs, hospitals, doctors, and science. But I am learning a very real lesson that I can be thankful for something but still not really love it.
Malachi really wanted to show his new wheelchair to his friends at school, which leads us to our low for the week…
Low- Malachi tries to go to school every Thursday and Friday for 2-3 hours. This is where he gets his therapies and his social interaction. He hasn’t been able to attend very consistently this year due to all of the medical issues we have been dealing with.
He spent two hours on Thursday at school and on Friday morning someone that deals directly with Malachi in the classroom tested positive for Covid. As you know, Malachi has had it twice, the second time being much harder to recover from than the first. His last wave of Covid was in late August so we are just out of the three month projected immunity, so we aren’t sure that his immune system will kick in as it should.
As I type this on Sunday evening Malachi is symptom free but his seizures have been very out of control. We aren’t sure if this is a reaction to him trying to fight off Covid or something unrelated, but they are so strong they are causing him to cry in fear when they are over. Some have been lasting over 3 minutes and he is having over a dozen a day.
So far he has tested negative but it really is too early to rely on those home testing kits. So we have been quarantining him this weekend as we watch and wait.
When we are making decisions for Malachi we focus on giving him the best quality of life possible, even when that has potential to reduce his quantity of life. That sounds harsher than it should, so let me explain a bit.
I could wrap Malachi up in a bubble and keep him home and away from the public. That would likely extend his life a bit as I protect him from potential illness. But that wouldn’t be fair to Malachi. He is such a social boy and loves to interact with others. He loves outings, and he loves spending time with friends. Keeping him in a bubble would increase his quantity of life but very negatively impact his quality of life.
However, Jake and I are always struggling to find the healthy balance between both. We have been trying to turn a blind eye to potential sickness school can bring, but I think we are at a point where we need to hit the pause button for a bit and let his body recover. We will have to find ways to fulfill his social needs (and therapies) in a more controlled environment.
Let’s head towards Levi’s highs and lows from the week!
High- Levi has made some huge progress this week with his g-tube feedings. Ever since his g-tube popped a few weeks ago he has had very irrational fears with his mickey button (the circle part of his gtube that you see on his stomach). He keeps telling me he wants it out, which is very possible for Levi in the future but he isn’t able to take all of his calories by mouth at this point. We are getting there, but still have some work to do. He asks me to check his tummy tube at least 4 times an hour, even asking in his sleep. It has become a slight obsession.
Levi eats and drinks throughout the day as much as he can and we supplement with formula through his g-tube 3-4 times throughout the day and all throughout the night. For these sessions we hook up a bag of milk we keep in a backpack and a pump sends it in over 15 minutes.
There is another way to do g-tube feedings called gravity bolus. This is what we do with Malachi and it is so much faster than a feeding pump. The concept is easy to grasp- you attach an extension (straw) and large syringe to the gtube and simply pour the milk in and let gravity take it into the belly.
We have tried gravity bolus feeds with Levi before and he has screamed and cried saying that it hurts. I don’t think it hurts him but I think he just doesn’t know how to explain that it is uncomfortable.
But this week Levi asked specifically that I feed him like I feed Malachi. This is HUGE! So we treaded very lightly and did small bolus feeds for the first few tries. The biggest setback would be his belly not handling the large amount all at once and him vomiting, which he did a few times this week but he is slowly tolerating more each day.
We are officially committed to daytime gravity bolus feeds for Levi and using the pump at night only. The next step will be going to nighttime only, and then naturally we will trend toward eliminating that. If we can go several months without him needing to use the tube he could have it officially taken out forever!
I have such anxiety when I think about that, as the tube is still needed post op for Levi and when he is sick. But I would love a tube free life for him so I will try to put that anxiety in God’s hands.
And when I try to think of a Levi low for the week I can only think of two things…
Low #1- potty training. He is doing great with it, only having accidents when we try to leave the house for extended periods of time. But the amount of urine I am cleaning up around the toilet on a daily basis is baffling. Not really a ”low”, more of a holy moley moment wondering if this is what the next several of years hold. Jesus take the wheel.
Low #2- Levi is growing up. And his level of independence is increasing. This week as we walked into basketball practice I tried to snap a photo because he looked so cute in his tall ”basketball” socks he found in Malachi’s sock drawer and insisted on wearing. He was not amused and said ”Mommy, please go upstairs.” (the area where the parents have to watch from). Ouch.
But truthfully watching him grow has been so special and unique. The ease at which he passes through different developmental stages has been fascinating.
We got to do some more family trail riding in the backyard oh the joy it brings them (and us when we hear their giggles). It is such a big adventure for them, and being able to do that right outside the back door is a blessing. We always worry about regret on big purchases like these, but no regrets on this one!
This week I am in a good head space. I think the rest that this weekend brought with us as we quarantined has something to do with my clarity of mind. But I also have to attribute it to making a concerted effort this week to read AND ABSORB the Bible each day.
I have been so spiritually thirsty, but when I get the free moments to open the Word of God the stillness of the moment reminds me of my exhaustion and even though I am reading the words my mind cannot seem to absorb and process them. When I am done reading the words I feel so unsatisfied, which is not a healthy way to truly connect with God.
So this week I tried something new and I read a chapter a night, taking a screenshot each time I read a verse that pricked my heart. Then throughout the next day I pulled up those verses to read again and again, allowing myself to absorb them instead of going through the motion of just reading them.
And this is the one that really took root in my heart throughout the week:
Colossians 3:2 ”Set your mind on the things above, not on the things that are on earth.”
The word ”set” has been a reminder to me that our minds are naturally wired to focus on earthly things…our possessions, our problems, our worries. Focusing our minds on the things above has to be a concerted effort. But when we successfully ”set” our minds on the things above we seem to sail through those earthly moments that used to consume our minds.
This verse also reminded me that I need to start teaching this habit to my own children, helping them process what ”the things above” look like. Teaching my boys about God is something that is so important to me, knowing that some hard moments and conversations will be in our future.
While I know I can never fully prepare any of us for what is to come here on earth, I recognize the importance of building that framework of faith to point to when those hard times come. How can I expect Levi to be able to set his mind on the things above during the hard moments if I don’t start teaching him about those things now.
And those heaven talks with Malachi have become the favorite part of our day as we think about all the wonderful things it will hold for him. What a glorious thought it is thinking about all of the ”firsts” he will get to experience there.
Such a bittersweet thing to talk about and process.
Ugh the emotional roller coaster the special needs world puts you on. Sometimes I yell that I want off this ride, but in my heart I know that strapped into that coaster seat is exactly where I am meant to be.
Please join me in praying against more Covid in the Carroll house. And pray that Malachi’s seizures slow down and that we can identify the source of discomfort in his little body.