Updated: Jan 14, 2022
Alden is a joyous and social young boy. He loves his sister, lighting up with a smile and squeal when she engages him. He is curious about the world around him, observing rustling tree branches, studying new faces, batting his hands at toys. He loves books, music, dogs, peek-a-boo, family dinners, and being outdoors.
The young brain is so plastic and every case of polymicrogyria is so unique, that it is impossible to know, looking at our little baby, what he may or may not be able to do physically and mentally in the future. As expected with his diagnosis, Alden is not hitting typical developmental milestones on any conventional timeline. We have decided it’s best to let go of these standards as much as possible (easier said than done)! Comparison is the killer of joy. Instead, we refer to his small gains as “Aldenstones” a unique unit of measurement. Little by little, he is continuing to show progress, working hard at his physical and occupational therapy sessions at Spaulding Center for Children.
He is at higher risk of serious complications from any illness, including seizure which are a common complication of polymicrogyria. In September, when he had his first cold with fever (not COVID, we tested negative!), Alden experienced his first seizure activity. It is vital that we keep our household as germ-free as possible as these events can significantly set him back developmentally. He is now on a seizure medication, and so far so good.
Dave and I experience sorrow in new ways, with greater regularity, than what might otherwise be right now. This is hard; but this does not have to be tragic. Dave and I practice gratitude; we cultivate joy and humor - pretty easy to do with a happy toddler in the house! Most of all - and this truly cannot be understated - we are blessed with an amazing support system - you are now a part of that!
What can you continue to do? Stay in the present with us; if you have a question about what the future greater than 6 months might hold for him, the answer is: we don’t know! We cannot know what the future has in store for him. Help us keep our house germ-free; but please come for socially distanced visits! Or, call any time - especially in these strange pandemic times, we would love to hear from you. Stay cautiously optimistic. Love him unconditionally, as we do.
More about PMG: Polymicrogyria is a brain finding that can occur to varying degrees in different parts of the brain. Alden’s diagnosis is diffuse bilateral, perisylvian-predominant polymicrogyria. The parts of the brain most affected might be less organized and therefore less useful. We do know that the areas of his brain involving his motor cortex are severely affected; making muscle control and coordination more difficult. This may mean that walking, feeding himself, and verbal language take significantly more time to develop or are unattainable. Time will tell. His frontal cortex and occipital lobes are less affected; which we can see as he curiously observes the world around him and seeks out social stimulation. Currently we have him going to various therapy appointments three times a week - physical therapy, occupational therapy, feeding therapy; communication therapy likely to begin around his first birthday. The team of therapists here on the cape at Spaulding Children’s have been absolutely wonderful; and we see progress, however subtle, happening. Alden has a wonderful disposition, and he works hard while he is at therapy. Having Alden in our family certainly makes things more complicated. But he forces us into a daily practice of compassion, hope, patience, unconditional love.