Growing Rod Surgery – 2 weeks Post-Op

So it’s officially been 2 weeks since Cole had 2 titanium rods implanted in his spine to help straighten his 89 degree curve. I spent a lot of time researching this surgery, collaborating with parents whose children had the same surgery, and asking the surgeon a million questions. However, once again, it’s not turning out the way I was expecting… Or hoping. I’m going to share a story with you from 2016 when Cole was implanted with a cochlear implant. Medical technology has advanced so much that a person born profound deaf, has an opportunity to, potentially, hear. I had watched hundreds of videos where babies heard for the first time after being implanted and they cried and laughed and it was truly a miracle! I couldn’t wait to see my son cry, laugh, and respond to noises. Well… That’s not what happened! In fact, for 2 years The Kubista Family played a game daily called where’s Cole’s Rondo (hearing device). This was the most played and least liked game by all of us, except Cole. Some of the many places we found this device was in toy boxes, under couches, under beds, in couches, under the stove, under the deep freezer in the garage, in the grass, in Lexi’s dresser drawer. Not in the drawer where the clothes go, in between the dresser and the drawer where you can only get to it by taking out the entire drawer. Oh yeah, one of the best places was in the transport van from our resort in Cancun, MX to another resort. That was fun, Mark had to frantically and persistently get a hold of that driver and have them come back to the resort so we could search for, yet again… The infamous Rondo.

Many times it would have been easier to just completely give up! Obviously, he wasn’t hearing and he wasn’t benefiting from this device so why put him through the agony of keeping it on? The truth is, fast forward to 2020 and my son is hearing!!! Yes, you heard that right a child born profound deaf and not able to hear a single sound is hearing, understanding, and a lot. You may take for granted the fact that you can say, “go get your shoes” and your child simply goes and gets their shoes. Nothing in this house is taken for granted and every milestone is celebrated intensely because we now understand how incredible little things (that aren’t so little) are… Like hearing. The first time Cole heard was in late 2017 when he responded to a loud drum being played behind his head purposely to see if he would hear it. It has slowly progressed since then. But the truth is, we were persistent and his brain needed time to rewire and practice, practice, practice hearing. When you think about it, it takes babies millions of times hearing Mommy before they know what Mommy is. This happens in language and vocabulary and kids like Cole go years without hearing anything. Many people go an entire lifetime without hearing anything. All in all, this surgery taught me something about Cole, he is on his own timeline and no matter how hard anyone pushes or anyone expects, Cole is going to do everything and anything on his own timeline.

We’ve been very persistent and consistent with getting Cole out of bed and making sure he is up and moving. However, he doesn’t always want to get out of bed and up and moving. There are times I try to stand him up and he bends his legs so he won’t stand, that’s frustrating but he wins because I can either sit him on the ground or put him back on the bed. When I do get him to stand, there are times he won’t even take one step. Now I recognize that he is in pain sometimes, he’s not comfortable, and this must feel so different for him. In all transparency, Mark and I have been ultra conservative with the narcotics and sometimes I feel really bad about it. We only gave him Oxy and Valium during the first week and even at that, we only did this a handful of times. I’m so torn on this topic because I saw Cole on so many narcotics during the first year of life and it was scary, it was sad, and I don’t ever want to see him like that again. At the same time, it’s not fair for my son to have to experience pain and discomfort. His legs look more knock kneed to me and his head is favoring his right shoulder, it’s still early and when I think about his little body having to compensate for the massive curve, it makes sense that now he has to learn how to be more straight. He is motivated to do more when certain people are around like Grandparents and cousins. This leads me to believe that he’s able, but it’s hard and sometimes he might just be sick of always fighting and I need respect that as well. He has gone on his swing, he has taken multiple stroller rides, he has walked 20 steps or so. Not perfectly, unstable, and very slow, but walking none the less. He even rode his tricycle the other day in the driveway. Although, the progress is not fast enough for my Type A personality he is making progress and he will continue making progress. After all, he is Cole! He is a superhero, a miracle, and just like everything else he has accomplished he will continue to persevere because that’s just what he does.