We tried hard to escape the head cold germs from last week but they came ready for round two. We had a very special needs night that has made me laugh due to the sheer ridiculousness of it, so I thought I would share it with you.
On Wednesday evening Levi was a bit more emotional than normal so my suspicions were up that something new was brewing. He had fully recovered from the cold but looked to be getting sick again. In addition to looking rough, his stridor (noisy breathing) at night was loud enough to hear from across the house, which is a sign that his airway is cramped (swollen or excess drainage being the cause).
As so many of our adventures do, this one requires a bit of a snapshot into our world. For the last several years we have had unconventional sleeping arrangements after a scary incident with Malachi being in a bed by himself. Jake sleeps in the master bedroom and I am in another bedroom with a bed with a firm mattress that doesn’t shake with movement for Malachi and I to share.
Malachi’s seizure activity at night makes us extremely uncomfortable leaving him alone. He can’t sleep on his back due to his reflux issues and his inability to clear vomit should he throw up in that position. So each night I position him very specifically and make sure a part of my body is touching his so I can feel if he seizes at night. When Malachi seizes he has incredible strength and contorts to the right. Each night he has at least two seizures like this, requiring me to rescue him by pulling his head out of the pillow until the seizure stops. I took a picture for Jake a few weeks back when Levi and I were heading to Cincinnati for surgery to help him understand the new sleep concerns.
Malachi is 9 years old but we have to maintain the vigilance of having a newborn since his body can’t escape the dangerous situations he gets himself into.
Also in that bedroom is a twin bed with sides to keep Levi contained while he sleeps since he is hooked up to his feeding pump at night. There are nights that I am convinced that the feeding pump is my arch nemesis, alarming for kinks in the tubing more than 6 times some nights this week. Levi is a wiggle worm when he sleeps.
That night I was able to get Malachi into the bed by 2am, something that I haven’t been able to successfully do for several weeks. I was relishing in my small victory as my head hit the pillow and my eyes closed. Within thirty minutes Levi abruptly sat up screaming “I don’t want to go to the doctor!”. I was desperately trying to quiet him down before he woke up Malachi and when I asked him what was wrong he said that his ear was hurting. When Levi gets worked up his narrow airway gags him and he starts heaving, ready to vomit.
You must be reading this thinking, I thought she said this was laughable and none of this is funny. Patience my friends.
I needed to go pull Motrin for Levi but didn’t want to unhook his feeding pump to bring him with me. He was begging to lay in “the big bed next to Malachi” so I put him and his feed bag in the big bed and turned on the Waltons for him, one of his favorite shows. I ran to grab Motrin and a water flush and ran back in and medicated Levi through his gtube. This is a process mid-feed with lots of thinking but I finally got him medicated and somewhat calmed down. I then slid into the bed between him and Malachi, trying to keep everyone in a sleepy state.
I took a deep victorious breath, so happy to have my head hit a pillow again when I suddenly felt a warm liquid seeping through my clothing. I sat up and realizing that I was laying in a puddle of pee. Levi in his emotional panic had wet the bed, peeing all over the blankets AND somehow peeing all over Malachi’s pillow. I watched in horror as the liquid inched closer to Malachi’s hair, stopping with about two inches to spare. And by some miracle Malachi was still sound asleep.
So I made the executive decision that we would all just sleep in the pee puddle and figure it out the next morning. It was a long night, but Levi slept for a few hours. The next day I took him to the doctor and sure enough, he did have an ear infection. We started antibiotics and he is not 100% yet but getting there.
Levi was an emotional ball of nerves as we drove to the doctor. His medical PTSD kicked into high gear when we pulled into the parking lot and he started shaking uncontrollably. The pediatrician office that we use is so accommodating for our family and agreed to bring the doctor out to the parking lot so that I wouldn’t have to unpack Malachi and take him into a very germs environment and also to accommodate Levi’s anxiousness. Levi’s physical reaction to the doctor is so pitiful to see. We had gone through every detail of what to expect but as soon as he sees scrubs he loses his mind. Bless his little heart.
Malachi is still recovering from last week’s cold as well, trying to manage the post-cold cough that is lingering. With his system being a tiny bit off he has been running low grade fevers on and off throughout the week; this is pretty par for the course for him. But his oxygen levels have been GREAT and he hasn’t required any supplemental O2.
We spent the week knocking out chores at the house and trying to heal. And Levi preached some more sermons, of course.
If everyone can get healthy enough this week, the boys and I are going to attempt a trip to Ohio to see family and attend a wedding! I am sure it will be quite the adventure. We have been really wanting to do some fun Ohio trips so that Levi doesn’t always associate the state with surgery and pain.
We have been seeking God a lot lately on so many different things. It is almost overwhelming to think about the many things that we are mentally processing right now.
One of those things is schooling for Levi. There is a local grant that is willing to help fund a portion of his tuition at a small school in our area and we are considering enrolling him after Christmas for a variety of reasons.
1) Levi needs some autonomy. He needs something that is his. He is learning so many incredible lessons and such empathy from living with an amazing brother like Malachi; I think independence and personalized attention will be really good for him.
2) I am told to expect learning deficits from Levi due to his brain damage. Little known fact, Levi and Malachi share the same brain damage diagnosis called Hypoxic Ischemic Encephalopathy (HIE) and are complete opposite ends of the spectrum of that diagnosis. I firmly believe that Levi can learn if he is given the right environment that sees his potential.
3) As much as I would love to homeschool Levi, I don’t know that I am the person for that job right now. I am stretched so thin and dealing with so much mom guilt about not being able to give 100% to each of the things that beckon me.
This is still something we are actively praying about and seeking God on. But part of that process was touring the school this week. Levi was smitten and anxious all at the same time. This particular school has a very small class size and has accommodations in place for students that need a little extra help without the government incentives for special education. Just for some perspective, a student with Malachi’s level of complexity brings $7,500 from the government for his services in the public education setting. That money goes into a generic special education account for the county and isn’t always used for him specifically. This particular school that we toured seemed ready and willing to work through his complexities, like the feeding tube, physical restrictions, and his seizures.
This has been a season of life where I have been praying about very specific things but not getting specific direction from God. But in God’s amazing way He has been guiding me through several truths from His Word as I wait patiently (or impatiently sometimes) on that direction.
One of the things He continues to press on my heart is a call to clothe myself in humility. As I have been studying scripture this week I read one that has made me really think about the concept of humility.
Deuteronomy 8:2-3 “Remember how the Lord your God led you all the way in the wilderness these forty years, to humble and test you in order to know what was in your heart, whether or not you would keep his commands. He humbled you, causing you to hunger and then feeding you with manna, which neither you nor your ancestors had known, to teach you that man does not live on bread alone but on every word that comes from the mouth of the Lord. Your clothes did not wear out and your feet did not swell during these forty years. Know then in your heart that as a man disciplines his son, so the Lord your God disciplines you.”
I often get frustrated when I am not getting a clear direction form God, which highlights my need for humility. I operate like my timeline should be God’s timeline, which is a very arrogant stance to take with my Creator.
This verse is referencing the Israelites who left Egypt and spent 40 years wandering in the desert before God led them to the promised land. Talk about a season of waiting! But the purpose was “to humble you and test you in order to know what was in your heart, whether or not you would keep his commands.”
Seasons of waiting absolutely reveal what it truly in our heart. These seasons test our faith, our obedience, and our desire to give Lordship to Him. Our uncomfortableness highlights our true inner thoughts.
The literal bread from heaven (manna) sustained the Israelites each morning and each night. And in the same way, God sometimes gives us just what we need to get through the next few hours, including His wisdom and direction. And my frustration that stems from not having an abundance highlights my need for humility. He is God and I am not, and my impatience is revealing my heart.
But I also love the reminder at the end of the verse that the Israelites clothes did not wear out and their feet did not swell. Even in their moments of discipline God was still so good!
I am rambling now! I made the mistake of saving the devotional thought for the morning and all chaos has ensued. Levi has thrown up four times this morning and has had some other drama that antibiotics can often bring on. He is feeling crummy so I am going to sign off of here and snuggle up next to my sweet boy and listen to the rain.
Please remember both boys in your prayers this week, that we can return to full health. And pray for my patience as I wait on the Lord, cultivating a heart of humility in the process.