Thus Far in a Nutshell
Thanks for all of your support, prayers and inquiries today. As many of you know, Caleb had quite a dramatic entrance into this world three years ago (birth story to come in a future post). He was born with a heart condition called Wolff Parkinson White which we have been managing with medication for the most part.
While at the cabin a few months ago, Dan and I were awakened in the middle of the night by Caleb screaming due to his heart rate at nearly 300 bpm. He hadn’t had an episode in over a year. Off to Hibbing ER where a few shots of adenosine were able to revert him, we breathed a sigh of relief, cuddled him back to himself, and headed back to the cabin.
Shortly after this episode we started to be more and more in tune with his body. The stuttering we could no longer ignore, the excessive falling made us more nervous and the challenge of certain tasks were not unnoticed. It was time to put Caleb at the top of the priority list. Not an easy task given the three other boys, but something we both felt was necessary.
And this is when we start to have doctor appointment after doctor appointment. The order of operations goes something like this:
General Pediatrician to express concerns (and now a sudden right toe walking)
Radiology for hip and foot x-rays (possible hip dysplasia)
Orthopedic Surgeon at Gillette Children’s Specialty Healthcare to express concerns of gait (inability to run, jump, go up/down stairs).
Right toe walking interferes with gait analysis and instead requires a cast series (one every week for 3 weeks) followed by a foot brace.
Follow-up appointment with Orthopedic Surgeon after cast series and weeks in foot brace result in continued concern with gait.
Neurology for initial consult.
And that is the point in time where I start to realize I can no longer focus at work and I need to start managing this more closely. Caleb’s Neurologist spent two hours with us in our initial consult and ended the meeting by inviting his medical support staff to take Caleb so we could talk one-on-one about his suspected dystonia, a form of Cerebral Palsy.
Nothing more is able to be confirmed or planned until an MRI is performed to confirm the diagnosis or understand what this might be instead. So here I am preoccupied with nearly every thought searching for answers and wondering what to do next. My work has given me the ability to search for those answers so I know what to do next.
Our family continues to be crazy with our plethora of children, but even amongst this stress, I wouldn’t have it any other way. We are all in love with our sweet baby Caleb more and more every day and have all agreed to support him on his life journey.