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a collection of random thoughts and ideas from me, her, and sometimes us
BBA: the crystal ball
January 13, 2017Posted by on
Please read to the end.
BBA finally had his long-awaited MRI on September 26, 2016. It was going to give us the answers we needed to chart a course forward. The answer was never going to be perfect, but it presented hope. The results of the MRI showed a white matter volume loss (predictive of neurocognitive outcome; you cannot regrow white matter) that was either associated with a post-birth injury (a one-time event, not an actual “injury”) or a degenerative disease. On October 12, 2016, we learned we had 90 days until we would find out BBA’s fate. There would be three possible outcomes.
- BBA would maintain his current cognition, but would most likely never gain additional neurologic ability.
- BBA would maintain his current cognition, most likely never gaining additional neurologic ability, plus he has an unrelated genetic condition that would have an impact on his ability to develop.
- BBA has a neuro-degenerative or other multi-system degenerative disease which would significantly further impact his life.
Note: current cognition would not preclude him from learning how to adapt, engage, and develop, he would simply do so at an abnormal pace.
Everyone asks for the crystal ball with which they will learn the answers. We feel fortunate to have been given the chance to know our moment was coming and to prepare for it. We have spent the last 90 days living our lives, telling few about these three options. The options were not the end; we had no answers. Our children are so happy; we wanted to hold on to that reality for as long as we could.
BBA officially received the best and worst from us. Long eye lashes, giant cheeks, a smile that makes you stop complaining, a great laugh, and everything we have together that tears us apart. It is a moment as a parent when you stop and reflect on how perfect and imperfect everything can be at a single moment.
Today, January 13, 2017, we learned the path we are headed towards. As always, it is complicated and unclear. BBA has three genetic mutations that could result in the myriad symptoms he is experiencing. He could, technically, have all three disorders or only one. Each is rare. The two most common diagnoses are experienced either in only 10 families world-wide or in mouse research. We have a long way to go before we understand the long-term prognosis, but today there is no degenerative nature of the options (that’s good news!).
It is an odd gift. We had time to prepare for today. We had clear options within which we would fall. We knew on what day our world would change. To have all of those things is remarkable. We could shape our lives around this time. We are figuring out what this means for BBA and our family. We appreciate your love and support and hope you understand why we did not say anything in the past few months and are, instead, typing this out now.
Our friends and family are amazing. You have let us be ridiculous, counseled us, loved our children, shown us affection and tough love, texted us individually while we are sitting next to eachother, let us steal your time to gain a few minutes of quiet. We cannot thank you enough for all you do for us on a single day, let alone the compilation of days we have experienced since July 2, 2015.
BP and ZP