Every now and then we have a week come along that seems to last for an eternity. This has been one of those weeks. Jake and I either forgot to eat dinner or didn’t have time to eat dinner 4 nights this week!
We tackled several appointments, including a trip to the dentist with Malachi. Malachi was born 4 months prematurely and had a stomach perforation at two weeks old in the NICU. Because of the perforation he had to be on TPN (essentially baby gatorade) for several months instead of proper nutrition that a typical baby should get through milk. As a result he did not have much enamel (if any) on most of his baby teeth and had to have 15 out of the 16 drilled down and capped or pulled. Ouch!
We have been anxiously awaiting his new teeth to come in, hoping that they would be normal. The dentist told us this week that the few he does have popping through seem to be in good shape!
The boys did their rounds of regular appointments and therapies. Levi is making such great progress with his feeding therapy and it is his favorite appointment of the week because he gets to try new things.
We even ordered him his very own kid’s meal this week which is something we have never been able to do in 6+ years of parenting. He didn’t eat a bite of it but maybe next time haha.
Side note- I almost deleted the grilled cheese picture because I noticed Levi’s left eye wandering in a tiny bit. We see the eye surgeon in a few weeks and I am sick to my stomach thinking he will likely want to operate on the eye muscles of the left eye too. Just something to pray with me about. I am getting weary from all these reminders of the damage his brain suffered.
With all this eating, we are also having to increase bath times significantly. Levi loves to wipe all of the sticky foods into his hair. Yay for some normalcy though!
Malachi has been growing so quickly that his wheelchair can’t keep up! We took him in to get re-fitted for his chair this week and he is sitting so much better, especially with his legs and hips.
Malachi has been getting bored lately so we are really trying to vary the things we do with him. He is so tuned into our world, and it is always on our minds to make sure he gets to do fun things apart from baby brother. We have been using his activity chair more so he can play with toys up high, away from Levi’s thieving fingers.
He even got to have a friend stay the night this week for his very first sleepover! Malachi felt like big stuff. Levi and Jake went to bed early and the three of us stayed up way too late playing and reading stories. We laid out blankets and camped out in the living room. I put Malachi in his bean bag seat to keep him posturally safe and his digestive system didn’t like it too much…he woke up around 4:00 and projectile vomited but we managed to clean up and change Malachi without waking up our friend!
Tonight he went outside on a treasure hunt with dad. We drew out a treasure map and had four stops he had to make along the way, each one requiring a task (ie find a stick and tap on the mailbox four times). He loved the adventure and squealed with joy when he finally found the end treasure. His imagination is so big! Here they are doing mission #3 (getting three balls out of the grocery bag and tossing them onto the deck).
On Saturday our church hosted a “sensory day” so we took the boys for a little sensory play. Interesting fact: Levi struggles way more with sensory input than Malachi. They each have different things that trigger their discomfort…for Malachi it is multiple sources of sensory input, like loud music AND jumping up and down. Or hot weather AND loud music. The combo of things seems to trigger him easily.
But for Levi, he is very quirky about textures. He doesn’t like the way things feel. We are seeing this in the things that he touches and the things that he tastes. He also has a hard time with loud noises.
He wasn’t a fan of sensory day but doing things like that are the only way to help de-sensitize him.
Video time! This first one is a sweet video of Levi helping Malachi put his head back in the middle of the cusion. He sees Jake and I doing this all the time and recently we noticed him pitching in when we weren’t close.
And this second video is Levi being his goofy, silly self past his bedtime.
We will leave on Friday and make the trip to Cincinnati for Levi’s week of appointments. This is the first time we have met with these specialists since his vocal cords have started to move so we are very eager to hear their synopsis. He will have a procedure on Thursday so they can get a good look and intervene as needed. When he goes into the operating room for those we sign off on all potential procedures so they can fix what they need to while he is in there.
As we inch closer to being back in that hospital I am getting hit more and more with flashbacks.
I see that Ronald McDonald House bathroom sink where I washed Malachi’s bottles in a hospital baby tub…
I see that empty waiting room that Sunday morning that Levi required a time sensitive surgery…
I remember the number of steps from the door of the Ronald House to the nearest hospital entrance…
I remember the bench I was sitting on right after we arrived from Chattanooga when my cell phone rang to tell me Levi had coded and to come quickly…
Hospitals are such dangerous places for me. They have saved my sons lives, but they also carry with them so many painful memories that I have to battle. So while a part of me is excited to hear the report of the doctors there is a looming side that doesn’t want to enter that building every again.
Changing gears for emotional reasons haha…
Jake and I have a crazy life. Like genuinely doesn’t make sense. But we find that God continues to ask us for more. He asks us to give more time to things, more energy, more obedience.
We have both had a stirring from the Holy Spirit this week from God, each of us separately feeling it. It wasn’t until this weekend when we brought it up that we compared notes and realized the feelings matched. God is preparing our family for something and we aren’t exactly sure what it could be. There is an element of the mystery that is exciting, but there is also an element of “buckle your seat belts folks”. For now we are just watching and waiting to see what God calls us to, trying hard to not run out ahead of Him.
James 1 has a big challenge for us:
“But prove yourselves doers of the word, and not merely hearers who delude themselves. For if anyone is a hearer of the word and not a doer, he is like a man who looks at his natural face in a mirror; for once he has looked at himself and gone away, he has immediately forgotten what kind of person he was. But one who looks intently at the perfect law, the law of liberty, and abides by it, not having become a forgetful hearer but an effectual doer, this man will be blessed in what he does.”
Oh, how often I have been a forgetful hearer in my lifetime. I want to be a doer. And not just a doer, but an effectual one like the Bible describes.
How many times do we allow ourselves to simply hear the Word but not challenge ourselves to act it out? Are we deluding ourselves by reading scriptures with zero intentions of trying obeying them? Or only obeying them when it is convenient? Do we choose to do what God is calling us to do, even when it brings discomfort, fear, or sacrifice into our lives?
Being a doer of the word takes intentional focus. It doesn’t come naturally. It all sounds so easy when presented with the concept in the Bible, but when the moment comes are you willing to act out the Word in faith?
This week I am praying for more opportunities to be a doer of the word. I am praying for uncomfortable moments that require action, not just sentiment. I have failed at this so many times in the past.
I am praying that God uses my uncomfortable week in Cincinnati to remind me that His plan is bigger than the things my eyes tend to focus on. I pray that God helps me morph into an effectual doer this week.
Please be in prayer this week over my family: for safety while traveling, for health, for good reports, for grace if the reports are bad. Selfishly, please pray for me as Jake heads back to school next week when we return from Cincinnati. Taking care of the boys on my own is exhausting work both mentally and physically. I need that supernatural strength that only God can provide!