At first, even before Calvin was born, the trouble was two enlarged ventricles in his brain and the absence of much of its white matter. Then it was his premature birth, his trouble breathing, his dangerously rapid heartbeat and respiration, his inability to keep his body temperature up and the absence of his suck-swallow reflex resulting in his struggle to nurse and relative failure to thrive.
Then, the trouble was his vision: 20/1000—five times worse than what is considered legally blind—along with his penchant for staring at the sun. From there we mourned his countless missed milestones, pretty much all of them. He was colicky and refluxy and irritable and floppy. Then, when he was eighteen months old, we had the scare of Calvin’s first seizure, but the real trouble came after his epilepsy diagnosis when he was just two, because that’s when he started having to take serious drugs.
He’s had eye-surgery and a painful late-stage circumcision and two nuclear medicine tests where he swallowed barium to check his bowel and urinary motility. He’s had blood draws and intubations and sonograms and MRIs and CT scans and X-rays and multiple EEGs and one sleep study. He’s been taken away by ambulance and been hospitalized more than I care to remember. During one forty-five minute seizure we thought he was going to die. I know I've said this all before. I lament it every day.
He’s knocked out a tooth and whacked his face on the side of the tub even while wearing a padded helmet. He’s bloodied his nose and bashed the hell out of his cheekbone and gotten strangled in the safety net of his crib and choked on food. He’s cracked a tooth in half and fell off of our bed and out of his crib, both once. It’s a minor miracle that he hasn’t sustained a major head injury since his balance is so godawful bad due to the dizzying drugs.
He's tried umpteen antiepileptic drugs and drugs for reflux and drugs for slow motility and supplements for sleep and seizures and mood. We’ve tried troublesome dietary therapies and dubious cranial sacral manipulations and homeopathic tinctures and alternative functional medicine to eradicate yeast in his bowel.
He’s had trouble with sleep and pneumonia and urinary tract infections and ear infections and bronchitis and hypercalcification in his kidneys. His bowels have been impacted and recently we’ve begun to investigate more urgently the theory that perhaps he has been suffering from reflux, so he’s starting another drug for that tonight, and you can be sure I’ve researched its laundry list of side effects which about kill me to read. If that drug doesn’t work we’ll have to put Calvin under general anesthesia—again—to examine his esophagus for strictures and/or ulcers and then do a 24-hour nasogastric pH probe to test for the reflux once and for all.
And through all of this Calvin has to endure seizures despite taking powerful drugs and not be able to tell us how he is feeling or why, beyond simply coughing and screeching and whining. But he handles it amazingly well, far better even than I.
Yep, my son is a whole lotta trouble. But when it all seems more than I can bear I have to remember—besides never taking my health for granted—he’s a whole lotta love, too.
Then, the trouble was his vision: 20/1000—five times worse than what is considered legally blind—along with his penchant for staring at the sun. From there we mourned his countless missed milestones, pretty much all of them. He was colicky and refluxy and irritable and floppy. Then, when he was eighteen months old, we had the scare of Calvin’s first seizure, but the real trouble came after his epilepsy diagnosis when he was just two, because that’s when he started having to take serious drugs.
He’s had eye-surgery and a painful late-stage circumcision and two nuclear medicine tests where he swallowed barium to check his bowel and urinary motility. He’s had blood draws and intubations and sonograms and MRIs and CT scans and X-rays and multiple EEGs and one sleep study. He’s been taken away by ambulance and been hospitalized more than I care to remember. During one forty-five minute seizure we thought he was going to die. I know I've said this all before. I lament it every day.
He’s knocked out a tooth and whacked his face on the side of the tub even while wearing a padded helmet. He’s bloodied his nose and bashed the hell out of his cheekbone and gotten strangled in the safety net of his crib and choked on food. He’s cracked a tooth in half and fell off of our bed and out of his crib, both once. It’s a minor miracle that he hasn’t sustained a major head injury since his balance is so godawful bad due to the dizzying drugs.
He's tried umpteen antiepileptic drugs and drugs for reflux and drugs for slow motility and supplements for sleep and seizures and mood. We’ve tried troublesome dietary therapies and dubious cranial sacral manipulations and homeopathic tinctures and alternative functional medicine to eradicate yeast in his bowel.
He’s had trouble with sleep and pneumonia and urinary tract infections and ear infections and bronchitis and hypercalcification in his kidneys. His bowels have been impacted and recently we’ve begun to investigate more urgently the theory that perhaps he has been suffering from reflux, so he’s starting another drug for that tonight, and you can be sure I’ve researched its laundry list of side effects which about kill me to read. If that drug doesn’t work we’ll have to put Calvin under general anesthesia—again—to examine his esophagus for strictures and/or ulcers and then do a 24-hour nasogastric pH probe to test for the reflux once and for all.
And through all of this Calvin has to endure seizures despite taking powerful drugs and not be able to tell us how he is feeling or why, beyond simply coughing and screeching and whining. But he handles it amazingly well, far better even than I.
Yep, my son is a whole lotta trouble. But when it all seems more than I can bear I have to remember—besides never taking my health for granted—he’s a whole lotta love, too.
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| our little trooper |
Our kids are beyond tough -- as are their siblings and parents --
ReplyDeleteYou know -- over the years, I think the seizures and/or meds have actually de-sensitized Sophie to pain as we know it. And that brings up a whole other host of problems.
I'm sorry.
ReplyDeleteYou have never (to my knowledge) mentioned marijuana....Our physician-neighbor says it has been used sometimes quite effectively to prevent/ameliorate seizures. Would it be worth a try?
ReplyDeletedear carol, yes, worth a try. will be meeting a new neurologist tomorrow and will pose the question. i hope he knows something about it. xo
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