It’s tummy tube awareness week so I thought we would start with some facts about my tubies.
Levi has been proudly sporting his g-tube for almost exactly 2 years. During that time we have had a handful of emergencies but overall it has just become a part of our routine. He gets 4-5 feeds of high calorie formula during the daytime and runs all night at a low rate. We have a daily calorie goal we try to hit and adjust his schedule as needed to hit that mark.
He is fascinated with his tube so we have to keep it covered and tucked away out of his reach. We fill his bag for the day each morning so his backpack full of food and ice packs is usually too heavy to wear until around dinnertime.
Levi still loves to try to eat by mouth too but we don’t rely on that method for any calories toward the count. He still has to eat very small bites, and things like crumbled crackers in his mouth can make him vomit.
This week he has brought me a spoon from the silverware drawer and this tub of whipped cream from the fridge EVERY morning. The boy knows what he wants.
Side not here…Levi is a toddler tornado. If I turn my back for a minute I find him on the table, climbing the toy shelves, or doing something else semi-dangerous but slightly impressive. He has started carrying his toy drum around the house to use as a step stool to reach all the higher up things that catch his eye.
And the emotional pendulum with this kid is pretty wild…
This is his bored with therapies face.
This is his “mom took my whipped cream away” face.
And this is his “mom finally caved and gave me one of her stickers (aka feminine hygeine products)” face. He was super pumped about this one.
Okay, back to tubie talk…
If Levi’s vocal cords start to function normally and can close to protect his airway we will be able to take his g-tube out permanently. If they never wake up he will have his tube for life. Just a waiting game at this point; the statistic is that 50% of kids with BVCP have their vocal cords spontaneously wake up by their 5th birthday.
Moving on to tubie boy #2!
Malachi has the same g-tube that Levi does but we use his differently. Levi’s gets pumped in over 15 minutes but for Malachi we squeeze in his feeds over 1-2 minutes. His tummy can handle the volume better. Malachi gets 4 big feeds a day and we give him a high calorie formula mixed with blended foods.
Malachi also likes to eat by mouth but really struggles and can get panicky. We don’t push foods with Malachi, but the boy can knock out some chocolate.
The tube became necessary for Malachi about a year and a half ago. While Levi was in the NICU Malachi lost 15 pounds in 5 months. The tube has allowed us keep him healthy and fed in the midst of our crazy day. It used to take Malachi about an hour to take a full bottle by mouth so the tube has been a true game changer.
Here is the handsome 7 year old in his Valentine’s Day outfit for school.
Yes, Malachi went back to school this week for a day! He was super excited and did great.
He got a few belated birthday cards in the mail and loved the surprise of each one.
On Thursday the boys and I packed up and headed to the hospital in Chattanooga to see Levi’s pulmonologist. I took the stethoscope and “checked” Levi and Malachi’s heartbeat at least a dozen times trying to prep him for the doctor doing it to him. He handled it slightly better than his normal reaction but still struggled with that doctor PTSD.
The appointment went well and we are now on an annual basis with his Chattanooga pulmonologist, and annual with his Cincinnati surgeons. He will go back this summer for another procedure in Cincinnati, and will have some minor testing done here in Tennessee in the meantime, but overall the appointment went decently.
Jake’s parents purchased us a family pass to the aquarium so I attempted a solo trip with the boys after the appointment. Malachi was giddy to go see the sharks. The lighting is low there and he is able to track and see the movement of the different creatures. His joy is so contagious!
Levi was a terrified mess when we first went in and clung tightly to Malachi’s hand for security. He was pretty anxious the whole trip but had a few slivers of joy in there.
If you have been reading for awhile you may remember a post I did about a year ago about a stranger offering to add a therapy pool onto our home for Malachi’s muscle tightness. Unfortunately we haven’t been able to get in touch with him after several messages, leading us to believe it isn’t going to happen the way we had hoped. We are obviously disappointed but believe that God sees things that we don’t.
With Levi’s new CP diagnosis and Malachi steadily growing bigger (more awkward to carry and much heavier to lift) we have decided if we are going to tackle the therapy tub route we need to make it happen soon. We were able to apply for a grant that will cover a large chunk of the unit and have been spending the last three weeks trying to sort out the details. In the long run we will be saving up our money to add a roof system over the top (like a picnic shelter open style) to keep the sun out of his eyes. We are so excited to be able to do this for the boys and just keep thinking about the joy and muscle comfort it will add to Malachi’s life.
The unit will go right off the front porch area so we can use the existing concrete for wheelchair access. It is just a few steps from our front door! More details to come when the ball gets rolling. Here is a photo of Levi standing close to where the unit will sit.
On Valentine’s Day the kids and I snuggled on the couch and watched an old video of Malachi that my Facebook memories had popped up. He was 1 year old and had just been moved from the ICU to a regular hospital room due to influenza pneumonia. He looked pretty rough, but truthfully was feeling the best that he had been in nearly three weeks.
We watched the video once and Levi aggressively signed that he wanted to watch it again. I played it a second time and about half way through his bottom lip started to pout, then quiver. He studied the video so closely and when it ended he burst into tears. He ran to me for a hug, but seconds later pushed me away and ran to Malachi. He picked up Malachi’s head so gently and hugged it into his chest, crying uncontrollably while comforting Malachi. Seeing his tender heart made me start ugly crying, so proud that he has that level of empathy for others. Malachi was grinning from ear to ear, clearly loving the extra attention and hugs.
The way they love each other is so beautiful to me.
Valentine’s night I took all the single girls from our youth group out to dinner and Starbucks. Listening to them chattering from the driver’s seat of the bus took my back to a more simple time, where world’s like my current one weren’t even on the radar.
As we waited on our table at the restaurant I started to dig through my purse, something I haven’t carried for months and took me 20 minutes to find. I couldn’t help but laugh at the things I found inside:
-half of a fake eggplant from Levi’s kitchen set
-9 small bottles of hand sanitizer
-12 individually wrapped sanitizing wipes
-a Target receipt from June, apparently the last time I carried this purse
As I sat and mentally compared my purse contents from 2008 and 2020 it was a very eye-opening reminder of the wild ride God has put our family on. And I couldn’t help but see the change that this wild ride has had on my faith.
I never really understood what the Bible meant when it says in Mark 8 “And Jesus told them, ‘if anyone wants to come after Me, he must deny himself and take up his cross and follow me.’ ” I didn’t understand the metaphor of the cross, or what the cross really meant.
But as I read that verse now I see it all so much clearer. The cross was a symbol of pain, suffering, and death. For someone to willingly and gladly take it up on their shoulders and pursue Christ in spite of the pain seems so contrary to human instinct.
But each morning as my very tired feet hit the floor and carry my ever growing seven year old disabled son from the bed to the living room I can’t help but hear that verse and feel it deep within my soul. We are called to deny ourselves. Other translations use the phrase “you must give up your own way”.
Taking care of Malachi is so so difficult. But it is also such a blessing. It forces me to deny myself every hour, every single day. This life is no longer about me, my luxury, my sleep. It is about serving the way Christ would, and relying on God to give you the strength to serve in that way.
The crosses that we bear, the painful things in our lives, challenge us to focus our eyes on Christ instead of focusing on the weight of the burden.
Are you gladly carrying your cross, or are you allowing it to grow into a root of bitterness in your soul?
I don’t think it is possible to take up your cross if you haven’t denied yourself first. I pray that my pride never gets in the way of me hoisting that cross onto my back and pursuing Christ…over and over and over again.