Probably, Possibly & Most Likely

We had our MRI follow-up appointment with the neurologist on Friday. After the visit, I was left feeling so… I don’t know… unsatisfied. I wanted things to be definitive and clear cut, but I was met with lots of probably’s, possibly’s and most likely’s. We came away with some good info. The damage to Caleb’s brain is called Periventricular Leukomalacia or PVL. Long name, but it basically means that the white matter surrounding the brain’s ventricles sustained an injury (not like a fall down injury). We know that this is a static injury, meaning it’s not going to get worse over time. We also know that PVL is much more common in infants who are pre-mature. PVL can be seen in both sides of the brain, so that’s why both legs display high muscle tone. And lastly, we know that PVL is the cause for Caleb’s cerebral palsy.

Here’s where all the probably’s, possibly’s and most likely’s come in. This injury probably occured before Caleb was born, but we have no idea when. The injury was possibly caused by the change in blood flow to the ventricular area of the brain, but again, there’s no way to be sure. It could also be caused by an infection sustained when he was too weak to fight it.  It’s unclear as to how this damage is going to be presented in Caleb. Will he have a serious physical disability or will it be mild? We’ll have to wait and see. There isn’t a correlation between the amount of damage in Caleb’s brain and the severity of the CP. The doctor told us time and again that we essentially need to treat the child and not the MRI. We’ll be following up with the neurologist every 3 months for the forseeable future to track his progress. The appointment didn’t give us any new information or many definitive answers, but I’m quickly learning this is the name of the game with CP. For a disease that affects so many, there is little research to turn to for answers. I hope to help change that, somehow.

As far as Caleb’s treatment plan, the doctor is satisfied with him receiving physical therapy on a weekly basis. The physical therapist we work with feels like he’ll only start to receive occupational therapy when he can sit on his own. He’s making such amazing progress though, and can sit on his own using his arms to prop himself up. We’ve also been offering him lots of finger foods in order to work on his fine motor skills. The boy loves him some puffs.

The funny thing about the neurologist appointment on Friday was that we had Wyatt with us, but not Caleb. You see, Caleb didn’t need to be there so he was at daycare. Wyatt decided to wake up that morning with symptoms of pink eye so we couldn’t very well leave him at daycare. The doctor’s office didn’t open until 8:30, the same time as the neurologist appointment so we took Wyatt with us with the intention of taking him to see the pediatrician immediately afterwards. We tried explaining this to the neurologist when he came in, but I don’t think he understood. I noticed he kept looking at Wyatt while talking about Caleb and I finally intervened when he declared Caleb’s spasticity in his hands to be getting much better. “Um, Doc, that’s his twin, Wyatt.” He shrugged it off, but I don’t blame him for being confused. Some days I can barely keep things straight.

Wyatt’s eye was cleared up the next day with the help of medicated drops and now he’s back to his usual antics. Namely public nudity at a local lake, but more on that tomorrow.

 

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I'm a working mom of three fantastic boys: Caleb, Wyatt and Parker. My husband, Shane, and I live in the Washington DC suburbs where we enjoy playgrounds, pools and never getting to sleep in. This blog is a journal of our day-to-day lives as well as a chronicle of Caleb's progress after a recent spinal surgery to alleviate the effects of his cerebral palsy.

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One comment on “Probably, Possibly & Most Likely
  1. Kristi Boyes says:

    I am loving your blog, Ali. Our prayers continue to be with you all. Keep the information coming.

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