Our countdown to summertime has dwindled to single digits and the Carrolls are ready!
We have been drowning in our to-do list since our Vanderbilt stay, overwhelmed by trying to resume some normalcy but alllllll the medical things. We are also still struggling to get to quality sleep so our energy and time management for each 24 hours has been a challenge, taking naps when possible to hit at least 5 hours of sleep in a 24-hour period.
But this past week we resoluted to knock out some much needed projects that we had been putting off.
Jake and Levi worked on getting the therapy pool ready, emptying the water, cleaning, and refilling it for the season.
As a reward for their hard work the boys had their first nighttime swim for the year!
Levi got to try out his new snorkel, which he definitely didn’t understand the concept of haha. Watching him swim always blesses me, knowing that had he been trached it would have been a much more complicated adventure.
And Malachi was all smiles and ready to swim. He didn’t last as long as he normally does in his neck ring; I assume he new back positioning will take some getting used to. But he was such a happy boy.
And I knocked out a big project, setting up a new medical supply cabinet! I can’t even describe the joy this brought me. We were swimming in all the medical things, and having them organized and managed is amazing. Our incontinence supplies and formulas are in different storage cabinets in other spaces. And each month we get another shipment to refill each of our supplies…it is easy to feel buried.
Malachi and I headed back to Nashville for his low vision appointment and were so disappointed to find out that the referral sent over was for a simple annual eye exam, not ow vision clinic as promised. I was so discouraged to have driven 6 hours round trip for an eye exam that could have been done 20 minutes from the house. And the letdown of believing we were going to get some answers on how to unlock more communication opportunities for Malachi was hard to manage.
After Malachi’s surgery we have had some trouble finding comfortable and supportive seating for Malachi. His old seats allowed a curve in his back, which his new back will not permit. So his lumbar hovers above the actual seat and puts a lot of pressure on his upper back and pelvis. We are still experimenting with some different options but right now recliners seem to be the winner with supportive devices on either side.
He is also preferring to sleep in the recliner, but I am not thrilled at the tightness we are seeing from him being positioned in a long sit for that long. He is back at physical therapy for a few sessions a week right now and he is making some great progress back to a bit more mobility.
Our little Levi is growing and eating like a wild man! We have been trying to slow down his nighttime g-tube feeds but he has lost so much weight during this testing process that he is back to being on the pump at night for added calories.
I am very curious what the Cincinnati team will have to say about his airway. Each year they evaluate if his airway is growing at the same rate that he is, intervening if it is not. He has been struggling with his breathing lately, but also dealing with some pretty major allergies which can restrict his breathing.
We will head north in just two weeks! And the anxiety in Levi is already brewing. He keeps asking hard questions, like “Why do I have to have surgeries and other kids don’t?” Finding answers that make sense to a 7 year old is a delicate process.
I read this quote last week and really appreciated it.
“Faith is not a formula for able-bodied perfection. It’s a posture of trust. Trust that God’s strength is made perfect in our weakness (2 Corinthians 12:9). Trust that God uses all of us- not just the ones who fit the mold.”
This season has revealed a lack of trust in my heart. My prayers changed several years ago for Malachi, praying that God uses Malachi and that we find peace throughout His workings. God is absolutely able to heal Malachi. But when I make that my only prayer for him I tend to convince myself that God isn’t answering my prayers. The continual silence of unanswered prayers can mess with you.
So I changed the prayers. And I changed my heart posture towards what I saw as “results”. God doesn’t owe us evidence of His workings. And sometimes looking so hard for the answered prayers can make us our own God, taking pride in knowing that we “made” that happen through our prayers to Him.
2 Corinthians 12:9 “But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.”
I am working on my posture of trust. The soreness of this last trial still aches deep within my bones, reminding me that I have let that muscle go unworked for awhile.
Thank you for continually cheering on our family and encouraging us in so many ways.
The dark clouds are finally starting to part above our heads. Malachi is completely off of narcotics and we are seeing glimpses of the carefree boy he was prior to his surgeries. He has also been off of oxygen for a few days and his tolerance for the world is getting stronger each day.
He is back to his opinionated self and communicating with his eyes. We actually go to back to Nashville this week to meet with the low vision clinic to see if there are any communication devices that may work for him with his very limited vision. We were able to connect with the low vision team while inpatient when they came to evaluate his eyes.
Side note interesting fact…when the brain ventricles are enlarged with fluid it causes pressure to build on the optic nerve that can be seen through eye exams. Malachi’s optic nerves were too deteriorated to come to any conclusions in the hospital about ventricle sizes but at least we were able to connect with an outpatient group through the exam.
Speaking of brain ventricles, we are scheduled to see the surgeon again in a few weeks and establish the date for his shunt surgery. Levi’s surgery is scheduled for the first week in June so we are aiming to schedule it shortly after that and spread out the medical procedures a bit. We are seeing an increase in Malachi’s seizures but that is likely due to the narcotics wean and him feeling more pain, but we are eager to rule out his shunt malfunction as a suspect.
We went back to Nashville last week to follow up with the ortho team and the plastic surgeon. Ortho took X-rays and said they are unchanged from the last images (praise the Lord for no loose screws/rods) and plastic officially discharged him. We don’t have to go back to ortho again for several months. Malachi was still a little reserved on appointment day, his body not appreciating the hours in the car. Levi enjoyed tagging along, too anxious to be left at home with dad for this one.
After his ortho clearance Malachi and I started a transition into a bedroom for sleeping. I know this is a hard thing for non-medical families to understand, but moving to a bedroom means also moving all equipment, charger cords, and positioning devices every night and then moving them back each morning. It is definitely a process, but I was hoping that it would help him get better quality sleep. He is still hit and miss, sometimes staying up all night and sometimes sleeping well. But it was the first time I was back in a bed since late February so my body was much happier!
Malachi asked to go to school last week for the Spirit Week rally and seeing him perk up around his friends was so sweet. And Levi enjoyed “Zoom Meeting” theme day, with business attire on top and comfy clothes on bottom.
In addition to Vanderbilt appointments last week we also had a slew of them locally to get to for both boys. It feels like we have spent hours and hours in waiting rooms, traffic, therapies, and appointment rooms lately. Levi had an eye doctor appointment which brings about a lot of anxiety and emotion in him. He has been saving up for a snorkel (which I am confident he won’t be able to do but who am I to interfere with that dream), so I promised him if he stayed calm and did what they asked him to do I would order it for him. He was thrilled when it came in the mail this weekend.
That led to me asking Malachi if he has something in mind that he would like for being so brave during all of his appointments and testing. And he very quickly signed yes. It took some time but we figured out the item he has his sights set on…a new battery powered squirt gun. He was very proud when we finally got to the right answer.
I have been very impressed lately of Malachi’s communication and how tolerant he is as we try to work towards his answer. Two specific stories come to mind from the last few weeks.
The first just happened after church on Sunday. I asked him who he was the most excited to see at church and went through the questions…was it a male, a female, a child, an older person, etc. We went through them all until we found the person- and it was someone I would have never suspected as they don’t get to interact often. But as I thought back to their interaction I remembered that she leaned down and spoke directly to Malachi just like he was a 12 year old boy. So I asked him, “Is it because she spoke to you?” And he quickly signed yes.
I had a mix of joy that he communicated so well, and a twinge of sadness that those interactions are rare for him. Can you imagine a world in which someone simply speaking TO you instead of ABOUT you made was the highlight of your day?? Malachi is such an amazing boy and loves others SO big. The amount of patience and grace he has humbles me daily.
The second communication story was late one night after Jake and Levi went to bed and we were deciding which big kid movie he wanted to watch that night. I gave him two options I knew he would be intrigued by (Batman or Jurassic Park) and he signed no to both. I asked him if he had a specific movie in mind and he signed yes. So I started the questions to try to isolate which one it was, which can sometimes be a long and arduous process. But I finally figured out that he wanted to watch the non-animated version of Beauty and the Beast. I really like that movie, and his eyes were bright with excitement. I asked him, “Malachi, did you just pick one because you know it is one of my favorites?” And he gave me the sweetest little side grin and signed yes.
I am so blessed by this boy.
Our high school boys soccer season comes to an end this week and we will have a few months of having our evenings back for a bit. Our family is past due for a reset and we are looking forward to family game nights, cooking together, and our routine walks again.
We have had some glimpses of summer weather lately, even enjoying a picnic dinner and some fresh air. Having family meals together and seeing both boys carefree and smiling has been so healing to my heart and helped me take deep breaths again.
Jake is working on getting the therapy pool ready for the warm seasons and we are all so excited to see how Malachi does in the water with his new posture. I also think it will be such a good stretch for his body! We are very curious if his feet will now touch the bottom of the pool with his added height.
Georgie came back over for a quick play date this week and Malachi was in a much better head space for his chaos haha! And just to add some explanation for any new readers, I work part time for an exotic animal farm so we get the chance to play with some pretty amazing animals.
Today we headed out to the farm to meet all the new babies they have added since our hospitalization. Malachi was very excited, which is an emotion we hadn’t seen in a while. It was such a precious time, getting to bottle feed baby camels, kangaroos, and snuggle sloths. Both boys really enjoyed their time there, but Malachi particularly was in his element. He was finally old enough (and postured safely enough) to hold Dash, the baby sloth and got to snuggle Zoey, the one year old.
I recognize that I have been a little long winded in today’s post so I will try to wrap things up a bit.
Last month I had someone local reach out and ask if I would be willing to share a testimony at their church. To be completely honest, I hesitated- recognizing that the wounds from these last few months are still very raw and unhealed. I have been frustrated and dissatisfied. I have been angry that my prayers continue to go unanswered. I have been so sad that we haven’t gotten our miracles.
But the conviction for my negative attitude has been pricking at my heart, as I recognize the distance my cynicism has created in my relationship with the Lord. So after some sincere confessions, repentance, and conversations with God I decided to go forward with sharing.
I never get tired of sharing what God has done in our lives. And preparing to speak was a much needed kick towards me really processing our recent trial.
I allowed myself to grieve our loss of normal…again. To grieve the many unmet expectations we continue to face. To re-visit the hardest moments, memories, and conversations. I poured out the tears that had been bottled deep within me. And then I took a deep breath and I surrendered those wounds to the Lord.
Surrendering doesn’t always mean erasing, although sometimes the Lord is gracious to do so. But it means that instead of viewing our scars from this last fight as a source of mourning I will commit to see them as a reminder of another time the Lord carried us through the fire.
We will choose to consider it all joy.
I heard a phrase a few weeks ago, “yesterday’s manna”. I am still processing what that means but the more I think about those words the more I find spiritual relevance in them.
“The Lord said to Moses, ‘I have heard the grumbling of the Israelites. Tell them at twilight you will eat meat, and in the morning you will be filled with bread. Then you will know that I am the Lord your God’.” -Exodus 16:11-12
The Bible tells us that they were instructed to only gather enough manna for that day and not to keep any extra. Some of the Israelites challenged this rule, saving some, but in the morning it was full of maggots and not edible. It was yesterday’s manna and it was designed to carry them through that specific day.
The Israelites were required to practice their faith…to trust that each day the Lord would provide exactly what they needed to be sustained. And he faithfully provided for the entire 40 years of wandering until they reached the Promised Land.
There is a miracle in yesterday’s manna, there is a miracle in today’s manna, and there is a miracle in tomorrow’s manna. God’s sustenance each day is enough! Sometimes we get so focused on yesterday’s manna that we forget to look around and see the things that God has lavishly provided for us today.
I may have botched the original meaning of that phrase, but processing it has been intriguing!
Please continue prayers for our family as we inch closer towards the next surgery in four weeks. And thank you for taking the time to check in on our family.
