This week is a big week for Levi as he will undergo his sleep study in Chattanooga. To recap, the ENT surgeons and the pulmonologist are concerned that Levi may be retaining too much carbon dioxide and may be having too many apnea spells while he sleeps. If this sleep study proves these things to be true the only option left on the table to is to trach him.
I am trying to think positively about the test, praying that he will knock it out of the park and wow the surgeons with the results. He is hooked to a pulse oximeter every night which reports his heart rate and his oxygen saturation but the numbers are the average over the course of 10 seconds so we can’t find a whole lot of comfort in that. The sleep study will give us real time information.
Clinically Levi is doing wonderfully. He is breathing quieter than ever before and his retractions are now very mild. He is mastering the art of rolling which is challenging for all of us as he wraps the tubes around himself and sometimes his neck. We have to make sure to be close and ready to unwrap him whenever needed. He is on the verge of crawling which will make things even more interesting. And he is growing!
His sense of humor is blossoming by the day and he does things just to be silly. He loves to make us laugh. And yes, he still looks just like his daddy; here is the picture to prove it:
Malachi worked hard at therapies this week. We tried implementing his communication switch on the horse but he just couldn’t seem to make the connection when we tried it. We may try again tomorrow just to see if it was a fluke. He has different faces for different things, and I was able to capture his concentration face while he was working hard at swim therapy:
He is getting more opinionated which is truthfully really fun to see. We try to give him options with everything he does, as we would want the same treatment, and he has been very clear with his responses. Last night I asked him who he would like to put him to bed, momma or daddy and he very quickly and clearly shouted “DAD”. He loves his daddy.
Speaking of Jake, this is the week he goes back to work. Boo.
We also got word this week that Malachi’s teacher from last year took a job in another county. This was really hard to hear as we felt very confident leaving Malachi with her each day. The nurse in the classroom will be returning so that is a plus but we will need to train the new teacher on all of his quirks before we will feel comfortable leaving him at school for a few hours a day.
The new teacher seems very kind and sincerely caring and even took the time to come over this week and spend a few hours with Malachi to get to know him. That has made both Jake and I feel much better.
And his former teacher brought her son over for a play date with Malachi. He really enjoyed getting to share his toys and swing with his buddy. At one point the boy got a little too rough (in a totally age appropriate and innocent way) with Malachi and my heart smiled when Malachi signed “NO” with his mouth…way to stick up for yourself! Here is a video of them in his swing:
I called the director of special education in our county to talk about student teacher ratios and it sounds like they aren’t sure how many kids they will get in his CDC room this year. If I had my way, Malachi would have a single paraprofessional assigned to him for safety/epilepsy reasons. But the director continues to tell me that she doesn’t feel that it is necessary and that the classroom teachers can handle all the children including Malachi without assigning him a 1 on 1. I am not convinced. We will be keeping Malachi home for the first few weeks until we can get a better idea of what to expect.
It has been a long time since I have actually considered calling 9-1-1 but last night I was close to calling. We went to a local even for families with exceptional children- something I had been looking forward to for several weeks. I am not sure what exactly the issue was- the heat, the noise, the excitement…
But Malachi went into a big seizure. He has 6-8 seizures a day right now but they are all short and predictable. Yes, this is a lot but Malachi has something called Intractable Epilepsy and we just can’t seem to get them under control. We could continue to try new medications or increase his current two but when we do he is nearly sedated and has no personality. We have to find that delicate balance of keeping him safe and allowing him to “live life” with some quality.
Last night’s first big seizure lasted about 4 minutes and his whole body was convulsing. We have rescue medication on hand if they last longer than 5 minutes but when we give him that we have to call 9-1-1 because it can relax him so much that he stops breathing. It isn’t an ideal fix so we avoid it at all costs. But as we passed the 4 minute mark I started to consider it. He finally came out of it and projectile vomited as he always does with the large ones.
Within about 20 minutes he went into another large one and that was our signal that it was time to go. On the walk to the car he had another. Then another on the ride home. And another before bed- all large and scary.
This was a photo from the group’s album that was posted today. You can just tell how wiped out Malachi was.
Poor little Malachi was exhausted last night and went to bed earlier than his norm. He was up and down all night but we thought we were through the large seizures. Today he had a decent day, but tonight he just had 3 more large seizures. Tonight they scared him and when he came out of each one he cried; it just breaks my heart to see him struggle. We aren’t sure if they are still related to yesterday’s incident or something larger like a shunt malfunction. We will be watching him closely.
So again, back to my school conversation, if I as his mother am nervous during these seizures what will happen at school when a teacher who has 15 other kids in the classroom do? I want to make sure he is safe. Period. Or what if there is a fire in the school? If the ratio is 5 student:1 teacher, which kids will she get out of the building first? Is it really safe to expect a CDC teacher to get 5 of the students with varying disabilities out efficiently?
This week I took a “Leah Day”….well a “Leah 3 Hours”. I went alone to town to run errands. I really lived it up with a trip to get the oil changed, the bank, and to get milk for the kids. It felt so strange but wonderful to park in a non-handicap spot and walk from far out into the store. Aside from the handicap ramp on the van, I was just like everyone else for those three hours. Even the action of getting out of the car and immediately walking away from it was such a strange sensation for me- we are used to a 5 minute unload process for wheelchairs, strollers, and kids wherever we go. And the stares. I was anonymous again and it refreshed me a bit.
And to add to the chaos- on Friday I took some of our youth group to the trampoline park and mall food court for one final summer outing. It is always hard to transition between taking care of the boys to watching 20 teenagers in a public place. Lots of counting heads and empty threats haha. When I went to pay for my lunch my card was rejected. I was totally embarrassed but knew that there were funds in the account so I called the bank. My debit card information had been stolen and the person was trying to use my card on multiple websites and it flagged the fraud department (praise God). Always an adventure in Carroll land!
I did a Facebook post this week about this picture that I figured I would share it with you for the devotional this week:
“Although the Lord gives you the bread of adversity and the water of affliction, your Teacher will be hidden no more; with your own eyes you will see your Teacher. Whether you turn to the right or to the left, your ears will hear a voice behind you, saying ‘This is the way; walk in it.’ “ Isaiah 30:20-21
Earlier today I caught myself in a moment of mourning. As I prepared to give Levi a bath I flashed back to conversations with Jake when I was pregnant. We talked about how Levi would be the “easy” one. After Malachi’s rough start we were so thankful that God blessed us with a second son.
We talked about how different this child would be…how it would feel to take him home after just a few days in the hospital instead of the 4 months big brother took growing and healing before we got to bring him home.
We talked about how odd it would feel to have a healthy child that didn’t have to be at the doctor all the time. A child that wouldn’t have to go through the pain of surgery after surgery to try to fix brokenness.
We talked about how this child would get to witness the testimony of his medically complex brother and how it would shape him to be a caring and special man. We never dreamed that he would have a testimony all of his own before the age of 1.
Levi was supposed to be easy. He was supposed to be healthy. He was supposed to be “normal”. Instead, Levi has surpassed Malachi’s NICU stay and has blown past his surgery count.
And as I prepared his bath this morning and spent 20 minutes gathering his medical equipment- things he literally can’t live without- the pain of unmet expectations hit me hard.
This verse talks about the bread of adversity and the water of affliction. And as I read that line I heard my heart pleading “YES Lord. Why does our bread and water taste so different than everyone else’s? Why can’t we get the manna you send to others? Why do we have to be…well, different?” The pain of seeing my children suffer is something I can’t put into words.
But then comes the next line. The line that reminds me that God’s plan is greater than the dreams I had for normal.
“This is the way; walk in it.”
So simple. So direct. So eye-opening.
We aren’t supposed to have “expectations” for God, with the exception of expecting God to move in our lives. And oh boy, He sure does move in the Carroll family.
So as I look at this picture- this photo that represents my unmet expectations and my shattered dreams…again- I hear the voice of my God saying “This is the way; walk in it.” And I put my unique and complicated child into that tub and reminded myself that each time we take a step of faith and rely on God to get us through the next 60 seconds we bring glory to His name.
And I continue to believe that God’s dreams and plans for my children is so much greater than my pleas for normalcy.
As I always tend to do, I find myself munching on some big concepts lately. I need to process my thoughts a whole lot more before I dig into them with you all…but I am close! But here is a teaser question for you to think on…
Are expectations good, bad, both, or neither?
Please be in prayer over the boys this week, each for their own unique issues. Levi and I will be admitted Tuesday evening at 6pm for his sleep study and prayers during that afternoon and evening would be appreciated if you think of us. We are told to expect to be finished at 6am.
And please continue to pray for wisdom for Jake and I. We need more than simple generic parental guidance from God…we need Him to guide us into the right BIG decisions that affect the lifelong outcomes for our boys. The weight of these decisions is such a big load to carry….good thing I serve a GREAT BIG GOD who can help us carry that load and strengthen our shoulders in a supernatural way.