With Diagnosis Comes More Questions
They told us it would take 4-5 weeks before we could have our follow-up appointment with Caleb’s Neurologist after his MRI on Friday. My response was, “that’s actually not going to work” and within a few hours we were worked into the schedule for yesterday (11/21). We are quickly learning the physician demand and supply issue is real, and it's even more real when it involves your own child’s needs.
Below is a picture of a homunculus which attempts to show what parts of the brain control a body:
This picture above was used in combination with Caleb’s MRI results to help explain his diagnosis. The MRI revealed multiple areas of brain damage on both sides of Caleb’s brain, for all intensive purposes, confirming the suspected Cerebral Palsy.
But with this diagnosis came questions due to the uniqueness of his situation. Many people with cerebral palsy have one larger area of brain damage on one side, which typically can explain the limitations seen in a body. However, Caleb has small areas of brain damage on both sides, which actually does help us explain his more minor physical limitations that we are noticing as he grows. At this point those include; right toe drag (originally right toe walking), left arm raised when walking, twisting of the abdomen, specific hand gestures and some stuttering.
The questions start brewing:
When did this happen?
Did this happen at birth? During a heart episode?
Why didn’t we know this sooner?
Is the damage related to one event or multiple events?
Could this happen again?
How do we make sure this doesn’t happen again?
What will his life look like when he is 10? 20? 50?
Will his physical limitations evolve as he grows?
Will this affect him just physically? mentally? emotionally?
and, and, and……the list goes on.
Caleb's Neurologist is wonderful, but doesn’t have all the answers we are asking. We are reminded that this is the practice of medicine, not the exact science of medicine. This is all too familiar as we experienced this when finding the right medicine for Caleb’s heart condition. What worked one day didn’t always work the next day.
Our course of action is the following:
Pray
Hematology (to understand if he is susceptible to blood clotting)
Physical Medicine and Rehab (PM&R)
Full lower body x-rays to identify possible leg length discrepancies
Pray more
The good news is we did away with Caleb’s right foot brace at this appointment. Not at the direction of the Neurologist, but just to give our child some freedom and to see how his body reacts. Our follow-up appointment with his Orthopedic Surgeon might be hard to explain, but sometimes you have to let your child live a little. With this decision came some new kicks that he picked out himself.
We love you Caleb and know that God has his hand on your life journey.