In the summer of 2015, Josiah's hearing continued to come into question. Though no serious hearing loss was found, the recommendation for hearing aides were present. As I tend to do nothing without full disclosure of information and examination, Carl and I asked that structural abnormalities be ruled out. If Josiah's hearing loss was a result of an easily fixable abnormality, we wanted to examine that road first. So, with no questions asked, a CT (cat scan) was ordered to examine the structural interior of Josiah's ears. The result: no structural abnormalities found supporting a surgical option. Instead, the CT scan made note of an unusual density to his cerebellum. Further imaging, via MRI, was recommended.
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 :)
Saturday, August 20, 2016
Footprints and Angel Wings
When Carl and I had confirmation that Josiah was to be born with Down syndrome (DS), we reached out to several Down syndrome organizations as well as the local Down syndrome clinic. We weren't calling, blind. After the "markers" suggested a possible Down syndrome diagnosis, we read and we researched. For about six weeks, we gathered every ounce of information we could get our hands on. We read, researched, talked to people, joined FB pages, watched videos, etc. Once the DS was confirmed, we didn't make phone calls seeking 'basic info' but rather "what's our first step, when the baby arrives?" Being a private person, these calls were out of my comfort zone. I wasn't sure why I was making them, except I/we wanted to be completely prepared for the little soul we were being blessed with. Carl handled a few of those first phone calls - it just seemed so strange, to me, to be reaching out to strangers, to discuss our child (who had not yet arrived).
It didn't take long to discover the unusual nature of the Down syndrome community. Families who have a child, or loved one, with Down syndrome are automatically accepted into this community. It is ONE community. Yes, there are local groups, regional groups, etc. But the ONE community is something I had never experienced. On FB, Moms and Dads were congratulating us on the beautiful boy, not yet born. Families were encouraging us to ask questions, to seek answers, and to be excited about being part of this special group of people. Josiah was already leaving footprints in hearts, minds, and souls. I'm not sure we fully appreciated the acceptance, and sense of family the DS community affords.
When Josiah was born, we received care packages from Down syndrome organizations from all over the country (the ones we had reached out to). Cute onesies arrived in the mail. Baby blankets and tote bags, bearing the name of the DS organization who had mailed it, appeared in our mailbox. We received books, notes, birth cards, videos, and a plethora of informational materials on Down syndrome. We were thrilled, but still taken aback. By now, we were following other peoples journeys with DS. We were watching other children, blessed by an extra chromosome, and trying to determine what was 'normal' for these children. When were milestones being reached? Were kids delayed in all areas? What health issues were others coping with? We were trying to set our expectations to be realistic, all the while trying not to delay growth due to limited expectation.
When Josiah was three months old, we found ourselves in the local Children's Hospital. We were about to pass our three month old son off to a Doctor who would stop his heart, to repair it. Josiah, like so many, was born with heart defects. His had already caused pulmonary hypertension. Though they had hoped to wait until 6 months of age, the pulmonary hypertension spoke to urgency. If not repaired, Josiah would not survive. While Josiah was being operated on, Carl and I waited. That was the day that our full understanding of the DS community was realized. A woman, in the Midwest, had posted a status update to her Facebook page. In summary, she asked for prayers and positive thoughts for Julie, Carl, and Josiah (who was becoming a heart hero - a phrase often used, referring to children who have had open heart surgery). Yes, I had friended this woman on FB. Yes, I was watching her own beautiful daughter grow. The fact remained, I had never met her. She had never met me. She took the time out of her morning to remember our family & ask for others to remember us, as well. For the first time, Carl and I realized what an amazing community we had found ourselves members of. Every child who gains their family access to this special club, leaves footprints behind. They leave footprints in the hearts, souls, and minds of their families, but also the doctors, nurses, therapists, and specialists who work with them. They unknowingly leave footprints with the other members of the community.
The DS community rallies around each other, every step of the way. They are there to cheer on every victory, every milestone. They are there to say, "It's ok, Mom" when you feel like you've failed your child. They are there to give you tips on how to handle a school issue, the next IEP meeting, that problem with the therapist your child is working with. The community is made up of people from all walks of life, all socioeconomic backgrounds, all racial groups, all religious groups, all over the world. If you need advice, just ask. There is someone out there, who will offer their support, advice, or opinion.
As the DS community cheers every victory, and supports every day to day struggle, the 'family' tie that binds us rallies behind a member whose loved one has earned their angel wings. We laugh together. We cry together.
As Josiah was still recovering from open heart surgery, Carl & I cried for baby R who lost his battle with pulmonary hypertension. Later we cried for little E who became ill and was gone weeks later. We cried for little K who fell & didn't have the speech to call out for help. The list goes on and on. Over the years, we have felt the pain of our 'family members' who have had to say goodbye to their little ones. We have watched the leukemia diagnoses and followed the journeys: some to restored health, some who have earned angel wings. In the midst of all the smiling pictures, funny videos, silly quotes, and milestones, there are members of this amazing community facing what no parent should ever have to face.
The past ten months have been a dichotomy of feelings, as I continue to grieve for Carl. This past week, I have continued to see all the DS posts - the smiles, achievements, victories, funny stories, etc. Then there was that one! Little J who went into Cardiac arrest. He earned his angel wings. I don't know the family personally, but they are a part of the DS community family. As we learned that J passed, the community grieved. The parents don't know why their little boy was taken from them. They are seeking answers. I cry for them, as I know others have (and continue to do).
Our children, our families, our loved ones, our community, leave indelible footprints. Those footprints begin forming a legacy. Eventually, footprints give way to angel wings. I don't know why in the DS community, we lose so many at such a young age.
"You were sent to me on angel wings.
You were perfect from the start.
A love I never knew before,
you left footprints on my heart.
You touched and blessed my soul and mind.
Then you began to soar
through the clouds, to Heaven's gate,
on angel wings once more"
Julie Stone
(in memory of all angels born still, too early, or who left too soon)
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