Wednesday, January 8, 2020
Monday, November 11, 2019
Sunday, September 15, 2019
Monday, September 9, 2019
Saturday, August 20, 2016
Carl and I spent many an hour researching "unusual density to cerebellum". The results left us no more certain about the meaning of these unusual findings. "It could be something." "It could be nothing." "It could be related to the Down syndrome." That's a clear as picture as we could form. As Fall proceeded, Josiah was fitted for hearing aides. We continued to wonder about the mystery now facing our son. Carl passed. Time passed. In early December, I found myself driving Josiah to a local Children's Hospital for a scheduled MRI. Josiah was sedated for the procedure, they obtained the necessary images, Josiah endured without complaint or complication. I continued with life, still wondering what the findings might show.
In mid-December, I received the results of the MRI. Although Josiah's brain looks different than an average brain, it looks "typical" for a child with Down syndrome. Josiah has more white matter than those without DS, but typical of a person with DS. I theorized that this might explain why people with Down syndrome are more likely to develop dementia in their 30's or 40's. The MRI showed that Josiah had fluid in his right ear (which was infected). There were the previously noted abnormalities within the structure of his ear but masses and tumors were ruled out. There was, surprisingly, evidence of an old brain bleed - as evidenced by staining on the brain. They stressed that it was old. It could've happened during child birth or as a result of very early pulmonary hypertension. Regardless, they voiced that it was not a current concern. No lesions, tumors, masses, or fluid on the brain were found. I called the neurology department and scheduled an appt for early January to discuss the findings and, more importantly, learn how these findings could impact Josiah.
The January appointment was cancelled by Children's. They had talked to Josiah's pediatrician and were determining the best follow up plan. I had the information (above) but still no clear cut answers as to what it all meant. It took well over 2 months, but a follow up was finally scheduled for March.
In the wee hours, on a March morning, Josiah & I headed to the Children's Satellite location where we met with a neurologist and hematologist from the stroke clinic. Yes, stroke clinic! I finally received the clear-cut answers I was seeking.
Josiah had numerous strokes, as evidenced by gray matter in two lobes of his brain - the parietal lobe & the cerebellum. The parietal lobe controls the "gps of the mind" - spacial awareness, ability to see peripherally, etc. The cerebellum controls balance. There were numerous areas of gray matter, consistent with numerous 'remote' strokes. They are all old. Although they, technically, damaged parts of Josiah's brain, they caused no ill effects. Their best guess is that these remote strokes happened around the time of Josiah's open heart surgery - likely when he was on the bypass machine.
So, it is believed that Josiah had two kinds of strokes: ischemic arterial stroke & a venous stroke. Due to the areas of the brain that were damaged, they did little to cause problems for Josiah. Through historical documentation, as well as tests they performed, they do not believe Josiah's balance or 'gps' system have been negatively impaired. Josiah's strokes are considered "silent strokes" as they happen, unbeknownst to anyone, and cause no impairment. In a child who has had an ischemic arterial stroke (the one that generally impairs the gps system), a young child's brain will often re-map itself so the damaged area is of no consequence. This is what they believed happened with Josiah.
The extra white matter, in Josiah's brain? Not related to Down syndrome. Rather, it is damage to the cells as a result of the earlier strokes. The believe these strokes were a one-time incident. They do not believe he is at risk for any further strokes.
They will perform another MRI at the end of 2016 to make sure there are no additional changes. If the 2 images look the same, no further follow up will be required.
Though stunned to learn Josiah had suffered from numerous strokes, I am thankful that these findings were discovered by accident. It was not symptoms that drove us searching for answers, it was a Mom & Dad who simply wanted to rule out a structural abnormality within their son's ears.
I remain in awe of this beautiful soul. Blessed with an extra chromosome, he courageously fought RSV, open heart surgery, and numerous remote strokes. His brain? It just remapped itself; No problem.
As I continue to climb up the down staircase, I remain in complete admiration. I continue to smile at a life so precious. I continue to point to the stars because nothing's going to stop Josiah from reaching his full potential :)
Sunday, November 15, 2015
After being told that Carl was gone, life changed in an instant. First and foremost, I had to tell people. I informed Carl's brother who was already enroute to the hospital but now coming here. I called my Dad. I called my sister-in-law. I called the Elementary School. I was in disbelief, shock, and dismay.
At 10am, Carl's family had arrived at my house. Together, we headed to the hospital. My family met us there. A chaplain awaited our arrival. Carl's Mom, brother, sister-in-law, and I headed to Carl's room. The curtain was drawn across the room. In the end, I chose not to witness what lie behind it. The others did. Heeding their advice, I held strong to the last images of Carl that were deeply embedded in my brain. That was enough.
I returned to the waiting room. Carl's belongings were brought to me. His briefcase, a hospital bag, and his boots - the last items that he had touched, worn, and used. It was surreal. It was incomprehensible. It was over. My Love was gone, and life would never again be the same.
Everyone returned to the house. Josiah arrived home at 11. He was happy and blissfully unaware of the tragedy that had just taken place. He knew not to be sad. He knew not that he had just lost his Dada. He smiled, laughed, and gave reason for us to carry on.
At 3:05, the big bus arrived home. The boys immediately noticed that family cars were in the driveway. They asked why. They asked what was going on. I asked them in and sat them down on the big beanbag.
It is heartbreaking to know that you are delivering the worst possible news to your children. I remembered back to Saturday. After talking to the ICU MD, I told the boys that Daddy was sicker than he had ever been. I told them that Daddy was so sick, he might have to go to Heaven to be well. The hypothetical had now become reality. I reminded them of that earlier conversation. I then broke the news that Daddy, in fact, had gone to Heaven. In that moment, the world stood still. Nobody existed but my children and I. In a room full of people, I found silence.
The boys only reaction, in that moment, was of understanding. The anticipated tears and meltdowns were null and void. Soon after, they went on to play. My heart broke as I knew the reactions would surface. I didn't know when. I didn't know to what extent. Daddy was gone. When was that information going to sink in???