The first sickness of the school year swooped in quickly this year; Jake was diagnosed with strep on Friday afternoon. YIKES! He called to tell me his throat felt funny and I immediately got out our rubber gloves and hospital grade sanitizer and started playing the “What would Jake do” game. In this game I re-enact a typical day for Jake and sanitize every possible thing he may have touched, coughed on, or infected. There are things most of you typical people wouldn’t even think of…car door handles, seat belt buttons, hangers in the closet, phone chargers…the whole process takes several hours.
And then we made our sickness plan. Strep throat can knock Malachi down pretty quickly and Levi has yet to be sick but we are told to expect an ICU stay and to likely be put on the ventilator. So I did the only thing that made sense…I packed him a bag and sent him to a hotel for the weekend. He has been on antibiotics for 3 days but we just want to be extra careful.
We just so happened to be having family from Ohio come and stay with us for the weekend too. We called and explained the situation and they weren’t deterred by the possibility of being in a strep exposed house. We have been having a wonderful weekend together and hopefully Jake will feel well enough to join us again tomorrow. So far the boys and I have remained healthy!
Leading up to our strep attack, we had a jam packed week of appointments. We started off with physical therapy for Levi, hippotherapy for Malachi, oxygen tank deliveries, pediatrician wellness checks, 4 trips to the pharmacy, insurance calls, and GI appointments for each boy…I also successfully navigated a Target shopping trip and a grocery store run with the wheelchair stroller and pulling a cart! Like a boss. There were so many days this week I felt like high-fiving myself…we are figuring this whole thing out.
Levi is 15 pounds 6 ounces and getting way fewer calories than recommended so we have increased his volume. He is fed using a pump that continuously (for 18 hours a day) flows formula through his g-tube so increasing his food is as simple as pushing a few buttons on his pump. BUT we do have to make sure his belly can tolerate the change and stretch accordingly. We are easing into the increase and he has not handled it well so far with lots of spitting up.
Malachi is still at 25 pounds, but looks healthier. We initiated the dreaded g-tube talk and will be going to speak with the surgeon and set a date in a few weeks. We would like to get the tube placed so it can be used to administer medications for his big upcoming hip/feet surgery in November. We are also hoping that it will help with seizure management as most of his seizures are caused by pressure in his belly. If we have a way to vent that air out it may help in the long run.
I scheduled an appointment this week with Levi’s pediatrician after we noticed that one of his eyes has been getting a little wonky. It looks like we are dealing with some form of strabismus so we will now be adding pediatric ophthalmologist to the list of specialists for Levi. That’s good because we have been a little bored lately with not much else going on in our lives…haha. Hope you can sense the sarcasm through the keyboard.
He has been hilarious this week. I woke up yesterday morning to this little goofball:
I got a call this week from the pulmonologist’s office that went like this: “Hello sweetie, I am looking for the parent of Levi Carroll. Dr. _________ has received his sleep study results and asked if you could come in on Tuesday at 8:45 to discuss the results?”
I have played that conversation over and over again in my head (especially the “sweetie” comment) trying to decide if that is a good thing, a bad thing, or a protocol thing. And then I “Leah”ed it and got panicky. I won’t divulge my sources but by the end of the day I got a copy of the sleep study and did my best to interpret the results using friends, google, and optimism. To my untrained eye it didn’t look horrendous. But we will find out how he thinks we need to proceed on Tuesday. I will give you more details about the results next week.
Here is a sweet video of Levi’s new syllables:
Malachi sat next to Levi at lunch this week and kept reaching his hand out to find Levi’s. Watching their special bond melts my heart so much. If I tell Malachi that Levi is watching him he will puff his chest out and do whatever his is doing ten times more exuberantly. We always talk to him about how he is setting such a good example for his baby brother and teaching him things (like how to drink a bottle like a big boy, etc).
I have had some emotional moments this week and they have really made me think. Friday night I was sitting on the couch holding my beautiful son Malachi and felt so drawn to pray over him. I told Malachi that we were going to say a prayer to God and his eyes widened with excitement. He LOVES when we pray. I spoke the words out loud and as I declared “Lord, heal him and make him whole” I looked at his face, staring in anticipation back at me, and I was struck with a pang of guilt.
As I have told you before, Malachi’s receptive language is pretty phenomenal. He understands so much more than we realize. And as I looked at his sweet face I started to wonder what he thought of my words to God. I thought about how confused he must be to hear mommy ask God to make him whole. I could hear him saying “Mommy, am I broken? Mommy, am I sick?” and I just got so emotional.
My petitions and pleas turned into prayers of praise as I thanked God for all of the beautiful things about Malachi. He listened and clung to each word.
This is the only life and body that Malachi has ever known. To him this is his normal. I would never want him to feel “less than” or imperfect.
So it started making me question my prayers over him and Levi. Should I be praying to God that they be made whole? And I feel in my heart that I absolutely should be.
But I also feel in my heart that God desires us to find beauty in all that we have been given…even the things that we never expected. Even the things that don’t come in beautiful and predictable packages.
While I desire for Malachi and Levi to be made whole, I am overwhelmingly thankful for the favor God has given us through them. We have the privilege to see the joy of the Lord reflected on our 5 year old sons face each and every day. We have witnessed firsthand the provisional hands of God meeting our needs before they become burdens. God has gifted us supernatural measures of faith that has carried us through some tough news and dark times.
God has given my non-verbal (for now) sons a voice, an audience, and a mission. So while I desire SO GREATLY that God hears and answers my prayers that they be made whole, I also recognize and trust that they are perfectly imperfect for this exact moment in time for a reason. God works through our imperfections, so we will call our family blessed that we have an abundance of those for Him to perfect!