Let’s start with some brotherly love. We have been teaching Levi Eskimo kisses where you rub noses together. Levi has been doing it to Malachi which is so precious to see. And Malachi loves it!
As you can guess from the title, the Carroll crew has been under attack with sickness. Last Sunday night I posted the blog and within the hour Levi was burning hot with fever. As soon as 8am rolled around I started making all the necessary phone calls to cancel his appointments for the day. Then we watched and waited.
Thankfully he sailed through the sickness in about two days and this one did not affect his respiratory rate at all. He was extra cranky, but that has been the name of our game for the last few weeks…he is an opinionated little boy. Jake texted me one day this week and asked how my day was going and this picture was my reply:
He likes to follow me around these days screaming until I pick him up. Or going after the trash can. We are officially into baby proof mode. I came home and Jake had rearranged the kitchen a bit haha.
Levi is working so hard at so many things these days and I am proud of his progress! We have to go into lock down when sickness hits and with more time in the house we were able to tackle more one on one focused tasks.
Focus and proper foot placement is everything!
Here is a video showing the progress we are making with spoon feeds:
Levi is still not safe to take liquids by mouth since his vocal cords don’t close to protect his airway. When we first started trying foods by mouth Levi would gag if something barely touched his lips. We have been working to desensitize him over the last few months with feeding therapy and he is improving by leaps and bounds. This video progress is huge!
Today he cried when we wouldn’t share our lunch with him so we strapped him into his high chair and let him have a snack too.
As you can see, he was pretty pleased.
Malachi managed to avoid Levi’s sickness and our week morphed back into normal by Thursday. We made it down to the hospital in Chattanooga for Levi’s final synagis medication shot for the season. Houdini Levi has been wiggling so much lately and we are having to say “no no” to him frequently. As you can see, he isn’t a fan.
Friday morning Jake called from work to tell me he thought he was coming down with something. By 2:00 that afternoon Malachi was running a fever of 102.5 and crashed fast. He has been having a hard time keeping food down and throwing up several times a day and multiple times a night. Even on fever reducers his temp is staying high. We are trying desperately to keep Levi from getting whatever Jake and Malachi have!
Here are some photos of sweet Malachi prior to the start of his sickness. I just love him so much!!
He has been asking for his feeds through his tummy tube almost every feeding time this week, making us think that he has a sore throat.
We also went to our favorite local restaurant on Thursday night for my free birthday meal (celebrated the big 3-3 this week) and Malachi got so tickled listening to the chickens jump up into the tree to go to sleep. I pulled out the camera to catch his joy:
Thankfully Jake is on spring break this week, so continuing to stay on lock down will be much easier. Levi has a sleep study tomorrow night, which I am dreading with a passion. We have already re-scheduled this study multiple times due to sickness and the next procedure on his airway is dependent on getting this study done so I am ready to get it over with.
We did something ambitious and booked a hotel for Thursday and Friday night this week to go on a little getaway as a family. I am hoping we will all be sickness free enough to actually get to go. Pigeon Forge is a two hour drive from here and we thought that Malachi might enjoy going to some of the silly dinner shows. One of the ones I booked asked if Malachi would like a cow bell to ring during the show, which is an emphatic YES! More cow bell!
Our appointments are all in limbo this week as wait and see if these germs will go away. The boys each have physical therapies, feeding therapies, GI appointments, horse therapy, and Levi’s overnight sleep study.
I read two quotes this week that really struck a nerve with me and I have been reading them over and over again and processing the words.
“Some people could be given an entire field of roses and only see the thorns. Others could be given a single weed and only see the wildflower in it. Perception is a key component to gratitude. And gratitude is a key component to joy.” -Amy Weatherly
I have been thinking about the last sentence in that one about gratitude being the key component to joy. And the importance of gratitude in our lives is overwhelming.
The moment we start to think that we “deserve” things or that we are entitled to things we start to lose the joy that the simple feeling of gratitude can produce. Life throws us unexpected outcomes and disappointments, but when we get to the point where we can no longer find things to be grateful for then we are in a dark place.
I think the same thing is true about our walk with God. We must always remember the power of the grace He freely gives. And having a heart of humility and gratitude are so incredibly important.
The second quote hit me on a more personal level.
“I sat with my anger long enough, until she told me her real name was grief.”
Anger is something that I have struggled with over the last six years. I can grow so frustrated over such tiny things…especially the ones that are out of my control. It is almost embarrassing to think about the tiny things that make me mad.
As I read this quote I found myself nodding in agreement, acknowledging that grief drives so many of my ridiculously angry moments. This just isn’t how life was meant to be when I pictured it. I grieve every day over the dreams I had for my kids. And I grieve every hour over their suffering, wishing I could take it all away.
This morning in children’s church I showed the kids a sealed envelope and told them that even before they were born God wrote out a special plan just for their lives. I explained how God doesn’t show us what is on that plan until the time is just right.
I told them that when God wrote my plan he had on there that I would have a special son named Malachi in a bright green wheelchair and a little baby named Levi. Nothing is a surprise to God.
I also explained that there is a whole lot more on that plan that God hasn’t let me see yet, but faith means that I trust that God’s plan is way better than anything I could ever imagine. I just have to be patient and trust that God will reveal more and more of that plan to me when the time is right.
The kids processed my words and then one of the 5 year old boys said “But what if I want to see my envelope? I want to see it now not wait until later.” And my heart totally related to his in that moment.
Don’t we all want to see what is in the sealed envelope. We all would love a glimpse of what God has in store for us in the future. But if we got to peek at the envelope it would completely deplete the need for us to trust in an omnipotent God whose ways are higher than our own.
So I am working on trying to re-direct that grief from anger to faith in the unseen plan God has for my family.
Please pray for us this week, especially Monday evening for the sleep study. The last one was a challenge for sweet Levi and I can’t imagine this round will be any different. And pray for my emotional health as I can already feel the gates getting ready to burst. Inflicting pain and discomfort on my children is so challenging to process.