It has been awhile since we have included a medical update on here, and there have been a lot of developments. Here are the highlights:
In the grand scheme of things, Kohl is doing well, but there are several developmental delays that we, along with his team of therapists, are working on. First, he continues to struggle with the use of his hands and and getting him to loosen and use his hands more is one of the main goals we are working towards in his therapy sessions. Beyond the obvious benefits of using your hands, such as getting to pick your own nose, high-five daddy, or shoot the bird at the nearest Alabama fan, hand use is an important building block to reaching other milestones like sitting up unassisted, feeding yourself a bottle, etc. While his progress has been sometimes painfully slow, it is still progress. And it is one of the many ways Kohl is teaching his parents to be patient.
He also has some delays in his motor skills. He does not sit up unassisted or roll over. A lot of this has to do with tightness and weakness in his muscle tone, but it is something he is also coming along on slowly but surely. Fortunately, Kohl’s dad is ridiculously strong and athletic, and his mom is pretty tough as well, so he has that going for him.
Another pervasive challenge at Chateau du Chrestman is feeding. We have learned that neurological damage, aside from the obvious problems, brings a host of other smaller issues that cause a lot of stress. One of those issues is a very bad case of acid reflux. Kohl’s tight muscle tone also includes his stomach muscles which makes his acid reflux even worse and has caused issues with his eating. As a result, he is an inconsistent eater who enjoys spitting up copious amounts of foul-smelling formula. Stressing over whether Kohl has had the requisite amount of formula and solid foods on any given day has become a favorite pasttime. As we type this blog post, however, he dominated all of his bottles and solids yesterday and is on track to do the same today.
Kohl had his second MRI since he was born, which was an eagerly anticipated event. The MRI was certainly an improvement from his first, but it still showed significant, global brain damage. The good news, however, is that MRI images do not necessarily tell the whole story. We understand that there are patients out there who have images that look worse than Kohl’s, yet function fine on a daily basis. Conversely, there are patients who have completely normal images yet present significant problems when evaluated clinically. Bottom line is that Kohl is doing much better clinically than his MRI images suggest. Just another example of Kohl’s toying with medical science.
There is one encouraging development. Kohl has an eye condition called strabismus which basically means that his eyes do not properly align. The condition has obvious effects on vision, and it can affect someone’s depth perception. Essentially, Kohl’s eyes may not be sending the correct signals to his brain. As a result, Kohl has been scheduled for a minor surgical procedure in January that will correct this condition and could have a very positive impact on his development. Many of his developmental delays, namely not reaching for objects and making very little eye contact, could be partially due to this condition. Correcting it, we hope, will result in significant improvement.
The only drawback is that he could be dissappointed when actually sees what he is supposed to see.
Finding out that you belong to these two geeks off the street would be traumatizing to even the most stable of us.
Kohl’s ever important team of providers, therapists, and caregivers regular evaluate and update his care plan. He is continuing with physical and occupational therapy for 1.5 – 2 hours a week each, and we’ve added a half hour music therapy session, which he loves. Through Early Steps, two new therapists will be joining Kohl’s team: a vision specialist and a nutritionist. He will have four sessions over the next three months with each. The vision specialist will help us to nurture and strengthen his vision while maximizing any gains from his strabismus surgery in January. The nutritionist will help us to improve Kohl’s eating habits (i.e. consistently eating within a certain time frame) and will give us exercises to improve his oral motor skills. This may even help with his speech development. We are excited to receive these services and are looking forward to Kohl’s continued progress!