Tying Up Loose Ends

Malachi’s junky breathing from last Sunday continued- not getting any better or any worse as the week progressed. Jake and I always struggle with wisdom in situations like these…do we take him in to the doctor and risk exposing him to something worse or do we just wait it out and see?

His only symptom was that he wasn’t able to breath through his nose. He wasn’t showing any signs of being sick, no drainage, nothing alarming to us aside from not being able to breath freely and more drool than normal. By the time Wednesday rolled around we were both getting more worried it could be something else.

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After a rough night with Malachi I prayed and asked God to give me wisdom on whether or not to take him in. Within about thirty minutes he threw up some mucus and it had a little bit of blood in it and that was the push I needed (blood can mean possible pneumonia). I loaded him up and took him to the pediatrician; they have walk-in sick hours from 8:30a-9a, and I got there early hoping to be the first patient to sign in. Unfortunately when I walked in 20 minutes early there was already a full waiting room and the sign in sheet had things like strep throat and possible flu under the “Reasons for visit” line and I started to doubt my decision to bring him in.

The nurse behind the counter graciously found us a back room to wait in instead of staying in the public waiting area. We checked Malachi’s oxygen saturation which was at 96- his norm. She listened to his lungs which sounded clear. We just agreed to wait and watch and I am glad we did as he is almost back to normal.

Because of the unknowns I did keep Malachi home from school several days this week. Whenever he misses school he is absolutely WIRED by bedtime. We try to keep him active at home but with us unpacking boxes and being boring parents this week, we just don’t seem to be doing a good enough job wearing him out each day. He had a solid day at school on Friday and that little sweetheart slept for nearly 7 hours straight that night!?!? What a blessing it was to mommy’s very achy body.

This picture was taken Friday morning as I tried to get Malachi ready for school on limited sleep. Let’s see if you can spot the issue here; the sad part is that it took a solid ten minutes for me to realize what I had done:

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Here are some pictures of Malachi last week at our annual church picnic on the mountain. This is Ms. Lisa who keeps him in the nursery on Sundays and Wednesdays.

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Malachi is smitten with his new house. He loves everything about it, and when I mention us going home he is overjoyed. In addition to him sleeping longer than normal a few nights this week, he is also falling asleep faster when he does wake up in the middle of the night (30 minutes up as opposed to 2 hours).

Here is Malachi’s therapy room as well as another snapshot from the living room into the kitchen area. We put the swing up higher so I wouldn’t have to bend so much to lay him on it.

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Boomer dog on the other hand is still adjusting to the change. He is 12 years old and a little anxious with change so this has been huge for him. He is terrified of the tile floor and will run from carpeted room to carpeted room like he is walking on lava. Baby steps. And Malachi is so incredibly happy to have his dog back!

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Malachi had his first shower in his new bathroom today. I couldn’t believe how easy the process was and painless for momma. I started him out a little too reclined in his shower chair which he was not a fan of…he acted like I was waterboarding him. But after he got to sit up he giggled with joy at the idea of water shooting at him. It was the most thorough I have EVER been able to clean him as maneuvering him in the tub was always tricky. He is one squeaky clean boy.

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Baby Levi is scheduled to arrive in just 4-6 weeks! As we get nearer to that goal Jake and I find ourselves trying to wrap up as many obligations as possible so we can go off the radar for several weeks when he comes. Our regular soccer season ended last week and our team is playing for the district championship this week. They are a very talented group of girls which means that we will likely be playing in regionals next week and will continue through the ranks until we lose.

Someone snapped this picture last week of me with one of our assistant coaches- I am looking awfully pregnant haha! And grandma on babysitting duty.

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We also like to keep the youth group active with at least one outing a month so we took them for bowling and pizza this evening and plan to have them over Wednesday for a bonfire. We have explained to them that we will not be able to plan many more events until after the New Year and they seem to understand. We have also lined up a substitute teacher for the Wednesday night and Sunday night Bible studies so we can take a small break as a family.

It is unreal how close we are to being a family of 4! So exciting!!

Jake has the week off for Fall Break (a southern thing). We sat down and made a list of goals of things to accomplish during the break and I am so ready to tackle some of the big things left on our list. We will have a medical day Tuesday as we take Malachi to the neurologist and I will visit the doctor, but the rest of the week has been reserved for chores.

This past Friday was World Cerebral Palsy Day- the goal being bringing awareness of CP to the world. I watched this video clip that someone online shared with me and I found myself getting emotional as this father talked about raising his son and the ways it has changed his parenting goals. I thought it would be nice to share with you…particularly the 1 minute 20 second mark and on. It does an excellent job summarizing a lot of the thoughts we have as Malachi’s parents.

This week has been surreal for us. As I look around at the blessing that this house already is to us, I find myself being overwhelmingly grateful that God has blessed us so much. I look at the path this last year has led us on and time and time again I see the hand of God gently guiding us.

There is a verse in the Bible that comes to mind:

Isaiah 30:21 “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.”

Embarking on this process was such a huge step of faith for our family. As Jake and I talked about our future goals in life we always discussed how we would try our best to rely on God to open and shut doors as He saw fit. It is so difficult to look past “wants” and not find ways to justify them as “needs”.

But we have watched God lay a path for us in the last year that is more beautiful and breathtaking than anything we could have ever imagined or mustered up to do on our own. He has been so gracious to us.

So “thankful” has been the word of the week for me. I repeatedly find myself simply looking around the room I am in and shaking my head in amazement that such a beautiful place has been entrusted to us. And what a challenge to Jake and I to be good stewards with what God has helped us create.

My eyes are starting to cross and that little monkey of mine just went to bed! So it is time for me to wrap it up and call it a night. Thank you for checking in, and I hope to have some pretty amazing reports for you next week!

God bless,

Jake, Leah, Malachi, and Levi Carroll

 

3 thoughts on “Tying Up Loose Ends

  1. Thank you so much for sharing that video. You and Jake are learning to be like Jesus in a real way. Thanks for the reminder that it’s not abut me!

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  2. Hi. It’s Sara the student again. I have had one question for a while now but I feel as it is so personal you don’t have to answer it if you don’t feel comfortable with it. Just how can you be sure of the level of Malachi’s intellectual disability? I have to say he just seems so very intelligent from all of your posts. I think lending an eye gaze system and trying it with him could be a good idea if you feel this way of course (EagleEyes gets lots of publicity). And the other is does he mainly drink bottles only or are you trying plain plastic cups for his formula (even with healthy toddlers I think they are the best idea so they can work on gripping,tilting and not spilling as soon as possible). I occasionally substitute in nurseries and have seen 1 year olds drink like preschoolers after exclusive use. And if those two aren’t safe enough how about spoon feeding and maybe playing around with one (if he has a good grip)? And I was just interested if you have ever considering trying to potty train him? (If this is too personal you don’t need to answer either).
    Sorry if I am taking too much interest or being creepy.
    I just think your blog is a very intellectually written one on special needs parenting in general. I’m a fan, obv.

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    • Hello Sara! We are always open to people asking questions about Malachi!

      To be honest, we can’t be 100% certain of Malachi’s level of intelligence. Based on brain scans he has global brain damage and should not be physically able to do the things he is able to do, but as you and I know he is very capable and is one very smart little boy. We have seen dramatic improvements over the last year in his abilities and his desire to learn and accomplish new things. He used to not be able to interact with us well and his receptive language (what he understood) was very slim. We are thrilled with all of the improvements we are seeing.

      As far as feedings go, his is mostly bottle fed but does do a spoon feeding once a day (usually at school). We have introduced the cup (both sippy and nosey) for him but his movements aren’t coordinated enough for him to independently bring a cup or spoon to his mouth without some major help. For Malachi to accomplish one particular skill, like say holding his head up, all other skills lessen. For example, if we want Malachi to work on using his hand to hit a particular button his body and mind focus solely on that particular task alone….he won’t be able to hold his head up and do other skills at the same time. This is something we are working on intensely.

      We also have to be very cautious about Malachi aspirating liquids if they are not administered in a proper manner. If they go down the “wrong pipe” they can get into his lungs causing aspiration pneumonia- one of the biggest killers of kids like Malachi. We have noticed that it is difficult for Malachi to breath when drinking from a cup and it increases the trapped air in his belly leading to more severe seizures. So there will be a day where we decide to tackle the transition and commit to exclusively drinking from a cup, but for now it is pretty low on the priorities list as we are still physically able to feed him a bottle.

      Eye gaze is something we have been exploring, but with his Corticol Visual Impairment it is difficult to assess what details he can and cannot see. CVI can improve over time and we are seeing some big improvements, so we would eventually like to get him onto a system.

      And finally, potty training has not been attempted and I don’t foresee it being a priority in the near future, but we are not opposed to tackling that one day! The homework list for a special needs family is astronomically long and we have to prioritize needs vs wants. We have to come up with some system of hierarchy or we get tempted to feel like failures as we are not able to accomplish everything we would like to in a day. So when we prioritize, things like feedings and body control rank way higher on the list than potty training- a task we would have to help him with every time since he is immobile. But we will never say never and have prepped the new bathroom for some pretty intense handrails when the time comes!

      Hope that answers some of your questions successfully. I am not offended at all so don’t worry about being too personal 🙂
      -Leah

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