Lots of little but good things happened this week:
Levi finished his antibiotic! We are hoping the ear infections stay away. I know that sounds simple and not noteworthy, but the meds seemed to be hyping him up more than normal. Like bedtime at 2am hyper.
Malachi is officially on top of his pain from foot surgery. We even took off the casts this week for a much needed shower, which he was so excited about- he loves his shower!
Levi had his one year checkup at the pediatrician’s office. She was pleasantly surprised by how well he is breathing. He really only squeaks when he is sleeping now, which tells us his airway is growing and his vocal cords are widening. His sleeping squeak is still impressively loud but we have grown so used to it that it doesn’t keep us awake. Oddly enough, is actually brings me some peace as I know whether or not he is breathing. We still keep him hooked to his monitors at night, which is also an added stress reliever.
Levi weighed in at 19 pounds 2 ounces (14th percentile) and 29.25 inches long (20th percentile). Considering his rough start and his low birth weight I am thrilled. Just for some perspective, Malachi weighed 12 pounds on his first birthday and was wearing 3-6 month clothes! So in Carroll world, Levi is a giant haha!
And he is so incredibly close to independent sitting. I tried to take a video this week and he made a dive in the process haha.
Here is a photo if you are unable to watch the video:
Malachi got to go back to school one day this week for a few hours. There is so much sickness floating around our community so the decision to send him is always a struggle for me. But when I asked him if he would like to go back this week he was ecstatic; we waited for a day when the teachers said there was very little classroom sickness and sent him for a few hours. It always takes him some time to re-adjust to the sensory overload school provides but he was a happy little boy getting to see his school friends again.
I know I have said this before, but I will mention it again- our parenting motto is giving Malachi the best quality life we can possibly give him. We don’t care that he may never say his ABCs, read a book, do a math problem…our priority in sending him to school is giving him a chance to be around his peers and have some independence away from mom and dad. The control freak in me hates dropping him off and walking away, but I see how much he enjoys having such a big kid thing to do and I try to respect that.
As you can probably tell from pictures, Levi got a new walker this week. Even though he is our second child, there are so many “firsts” for us as parents. Watching him learn how to maneuver has been a fascinating process. We have had to teach Malachi how to do everything- how to move his mouth to get milk out of a bottle, how to hold his head up, how to punch things with his fist. Seeing a child just naturally do things is such a different experience. We have laughed so hard this week as we have watched Levi discover how to walk in his walker. He loves to walk as close as he can to Malachi, much to Malachi’s delight.
I took a video of his first time in it, and now he is cruising like a champ. I thought I would share that first time video with you as it gives you a good 45 second glance at Levi’s silly personality. Note how proud he is when Jake compliments him at the beginning and his lovely tooting noise at the end…a noise he has officially mastered at waits for less-than-ideal times to practice…like when mom is on the phone with doctors or right in the middle of the Sunday sermon. Here is the video:
We had several appointments this past week, and have several more this week including Malachi’s bi-annual neurosurgery check up. 6 months ago we went to this checkup and they ordered a rapid MRI to get some baseline images of his shunt. When I took him for that MRI things did not go as planned and I had a legit emotional breakdown and snatched him off the table when they talked about bringing in anesthesia to sedate him. I had some major Levi flashbacks that day and left, a sobbing mess.
To me, there is no reason to be so invasive for baseline imaging but I agree that we do need some images. I suspect that since the surgeon did not get that baseline MRI he will want to order a CT this time around but we will see. Malachi likes CTs because the machine makes cool noises, so we can handle that one.
Malachi will also be starting his new Epidiolex medication this week. This is the first FDA approved cannabidiol medication to help reduce seizures for kids like Malachi with uncontrolled epilepsy. I have heard great things from other moms in my special need online communities, but there is some slight hesitancy as we are entering another “guinea pig” route. There are no long term studies on this medication and that always makes me a bit nervous. But if we can successfully reduce his seizures from his 6-8 a day to less than 3 then it is worth looking into.
Any time we introduce a new anti-convulsant (seizure med) Malachi takes at least a week or two to adjust to it. I am assuming that this one will not be any different, even though this week’s starter dose is .25 mls. That is just a few drops. Next week we will double that amount. I always dread these weeks as we tend to get a very lethargic Malachi- I hate seeing him so lifeless.
I am really excited to share with you all about Malachi’s fun Christmas gift this year! Malachi is such an amazing child, and seeing him smile despite his physical struggles is inspiring. He genuinely has such a sweet heart, and has been giving me the BIGGEST hugs this week when I pick him up and carry him. He squeezes me so tight that his little muscles shake, smiling from ear to ear as I tell him how strong he is. I wish each and every one of you could spend a day with him and see his precious heart.
I have been trying to think of something extra special to give him this year and I finally picked it out, but knew that it was something he wouldn’t be able to work on his own. I reached out on Facebook to see if anyone was able to help adapt it and one of the local high schools mechatronics/robotics classes volunteered to take on the project! I didn’t even know classes like these existed!
This is a ride on toy called “Wild Thing” made by Power Wheels. It hold up to 100 pounds and unlike other Power Wheels, this one will accommodate his dislocated knees and feet issues. We can also get one of his special seats to attach making it fully supportive and comfortable for him. The only issue is that it is controlled by two joysticks at each hand, which Malachi clearly cannot do. We asked the robotics team if they could make it remotely controlled by us and they think they can accomplish this!
I am so excited to see what they are able to come up with!! Malachi is very into “running” fast these days, and we do the best we can racing him around in his wheelchair. But to know that he could independently go fast will put such a big smile on his face! The device is small enough that it could fit in the back of my car and could even go along with us on hospital appointments and his soccer games so he can play independently. I am so thankful that this group is willing to tackle such a big project for us.
I will drop off the special seat and the Wild Thing this week and I am taking Malachi by so they can get to know him and his needs a bit more. As you know, I am all about awareness so the opportunity to share Malachi’s life with a group of young people who have the potential to better the special needs world with technology later in his life is something I am looking forward to.
Alright, now into the mind of Leah…
Sometimes I despise my ability to remember things so well. Memories can be such beautiful things, but they also hold the potential to rip open freshly healed scars. These memories have been my biggest battle lately as we are now into the “last year at this time…” mode.
This time last year is when we were officially given a diagnosis and prognosis for Levi’s condition: bilateral vocal cord paralysis. It was like a sucker punch to my gut. While Malachi’s untimely birth brought about overwhelming feelings of sadness and hopelessness, Levi’s new diagnosis brought new ones into the mix…anger, bitterness, defeat.
I remember laying in bed and thinking, why us? Why again? And many of you have resonated these same thoughts with us through this journey.
I am a problem solver. Give me a problem and enough time, and my mind comes up with potential solutions. With medical conditions, this skill holds zero value. I am powerless, with no solutions to offer. I am simply a bystander.
But I am overwhelmingly thankful for the many people in the medical community that aren’t powerless, holding the ability and desire to continue creating quality living for kids like mine. Five years ago, my Levi would have a trach right now. But thanks to some problem solving minds and a team of doctors willing to take a chance on us, Levi is trach free. Again, please hear me say that I am not anti-trach. They are wonderful, life saving devices! Some of Malachi’s best friends have trachs and I am so thankful that that technology exists. But I am so thankful for options.
A year ago today, we were facing some huge decisions for our Levi. I think about the poem by Robert Frost that talks about the road not taken…
Please keep all of us in your prayers this week as we continue to navigate our wonderfully crazy life. We continue to pray for and believe in a total healing for each of our sons.