Last weekend’s cold temperatures and snow showers bought us a few extra days off with dad! Jake’s school system didn’t end up going back until Wednesday so we made the most of our surprise time off.
Monday’s temperatures were still just a bit too cold for horseback riding, especially considering that his last semi-chilly lesson resulted in him spiking a temperature of 100 as his body struggled to regulate. Instead we spent the day running around and picking out things for the new house (vinyl colors, etc)
Tuesday was extra special as Malachi’s music class started back up for the semester. He was so excited that his dad could be there to join in on the fun.
Then it was off to a friend’s house to get some much needed haircuts for the Carroll men. They were looong overdue, but Malachi’s skin is so sensitive to his hair clippings that he has to get a good scrub down immediately after or he turns red and itchy. We didn’t have access to his bath chair while in Ohio, and the camper tub wasn’t large enough for his special seating so we opted to wait. Shaggy boy.
Side note- one of the things I am looking forward to the most is Malachi’s future bathroom. He will have a roll-in shower and his bath chair has a wheel base that will put him a few feet in the air. This will allow me to stand (instead of bending at horrible angles) and any help with decreasing the distance I have to lift him helps preserve my back a bit. The tub in our rental is quite possibly the least handicap accessible one on the planet as it has the old school sliding doors and jagged metal tracks to sit on. Getting him out of it is tricky and each time I do I can hear my body screaming at me. We are so excited for a house that is custom built for Malachi!
We had a few small victories this week but the most noteworthy one was against our nemesis, torticollis! If you aren’t familiar with that word, it is a medical term for a neck issue in which the muscles pull tight on one side causing the head to turn/rest dominantly one way. We fought this nemesis ferociously in the NICU and succeeded until his second brain surgery when they put in his shunt. In order to avoid laying him on that shunt we allowed him to turn his head a bit and we haven’t gotten it back to mid-line since.
I don’t know how to explain the emotion correctly, but this issue has made me so sick to my stomach over the last few weeks. It is so hard to see your son continually succumb to a position that is doing more damage to his little frail body. Scoliosis is extremely common in kids like Malachi, and fixing it requires lots of metal rods and surgeries. We would love to avoid those issues forever, or as long as humanely possible, so allowing him to slouch to the sides and contort his head is just not a good thing.
So over the last few weeks when I glance up from doing the dishes and see his little cheek resting on his shoulder, I have found myself feeling physically ill about it. It is my job to prevent things from getting worse to the best of my ability, and I just HAD to think of something. Luckily a mom on my CP group posted a picture of her son in a special tomato seat just like Malachi’s…and he had a pillow strapped to it! After talking to the mother I was able to order one for Malachi and it finally came in this week. Look at the pictures below and you will see the difference it makes!
And the best part about it is that Malachi LOVES it. Now that he is not exerting effort to control his head he is able to use the energy towards other things like eye contact and arm movements. You can even see in the 2nd picture how wild his eyes were with excitement at the new contraption (this was the first time he had tried it). It does tend to fold his ears in a goofy way when he wiggles his head but it is so refreshing to see him at mid-line. Small victory for us, but monumental for Malachi’s little body.
Malachi’s sleeping habits are continually changing but have found a nice little routine lately. He will go to bed around 10pm and wake up at 3:30. He and I will play and sit together for a few hours and he falls back asleep around 5:30-6:30 for an hour. Not ideal but doable. He has been so happy lately when he wakes up in the middle of the night that you just can’t help but snuggle that little bug.
Malachi has been having at least one medium to large size seizure a day and lately they have just wiped him out after. We are hoping to try some new holisitic things this week to see if they will help, but regardless we have scheduled an appointment with his neurologist to talk about some other options. The good news is that he is not vomiting with his seizures. In fact, he has only vomited one time in the last month and a half!
This week I have been in awe as I think about our life. I think back to the stressful times when we felt so helpless and lost. And while things are definitely still stressful, I can see the ways in which God has molded Jake and I to be able to handle those moments with a pinch of grace. Malachi’s outlook on life has been such a needed fuel for our little family.
This week I got to thinking about the fruit of the spirit, or the attributes that Christians strive to naturally flow from them: love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control. And as I looked at sweet Malachi I realized that he is doing a better job than me at most of those! It made me ponder how much joy Malachi’s sweet spirit must bring to the Lord.
Romans 15:13 “May the God of hope fill you will all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.”
When I look at my Malachi I can’t help but see the ways in which God has filled him with His joy and His peace. Like the verse says, my heart overflows with hope as I think about how much the Lord loves me, to send me a gift as precious and special as Malachi. I hope that others see Christ in Him the way that Jake and I do. It is absolutely amazing to me how a non-verbal little boy can already have such a story to tell of the goodness of God.
And until God allows him to tell it on his own, I will gladly continue to serve as his mouthpiece.
God bless you this week,
Jake, Leah, and Malachi