Category - Health

1
Don’t They Make Family Sized Bubbles (like the one from the movie “The Boy in the Plastic Bubble?”)
2
How Confronting My Child’s Doctor Brought Me Peace
3
The Beginning—This Is Not The Life We Ordered
4
Do You Have Spectacula Maculas?
5
Do They Have HBO in Hell?
6
The First Seizure
7
Paging Dr. McDreamy

Don’t They Make Family Sized Bubbles (like the one from the movie “The Boy in the Plastic Bubble?”)

Flu season sucks. Flu season as a parent sucks even more. Flu season as a parent of a child with epilepsy and underlying neurological disorders with a potential deadly pandemic thrown in, sucks beyond words. I’m not even going to delve into the whole H1N1 situation. I can’t. If I do, my head may actually explode. Last year, our whole family got the seasonal flu shot. This year, we are not. Why? For starters, the scary accelerants and other assorted shit they put in those things leaves me feeling queasier than when I had that nasty case of gastroenteritis last year (yes, the same season I had a flu shot). Besides, it looks like my children already have the flu….which strain will remain unknown as doctors have stopped taking swabs. Apparently the labs can’t keep up with the cost and time required to test for H1N1 so, they don’t. But if it walks like a pig and oinks like a pig, chances are it’s Swine Flu. I am as confused as any other parent right now and really have no advice to offer other than this: If you DO plan to vaccinate your child this season, don’t make the mistakes[…]

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How Confronting My Child’s Doctor Brought Me Peace

Since our daughter was little, we’ve worked with cardiologists, neurologists, therapists, orthotists, geneticists, pharmacists, speech pathologists—so many “ists.”. There was a time when I followed a specialist’s advice without question. They were the professional—the expert. Who was I to question them? That was then. Now I question everything. I research every word. I seek second and third opinions. I don’t care about the glares. I don’t care if I’m disliked. I do care about my children. They are my priority. Last week my husband took the kids to his parent’s while I hosted a party at our house. At 11:30 p.m. he phoned to say an ambulance was coming to take Avery to the hospital. She was having a seizure that wouldn’t stop. I met them in the ER. The seizure eventually stopped on its own, without medication this time. They eventually sent us home and told us to follow up with our neurologist. The following afternoon, I put Avery down for her nap. Thanks to our generous family, we now had a video surveillance camera in her room. I could see her lying in her crib on her side, staring, not blinking. I ran to her room as her eyes began repeatedly[…]

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The Beginning—This Is Not The Life We Ordered

My husband gave me a tacky beer cozy—you know those foamy cups that insulate your bottle? “This is not the life I ordered!” was written across it in neon letters. It was a silly gag gift for an occasion I can no longer recall. When our daughter was diagnosed with the genetic disorder that would change all of our lives, I dragged out the beer cozy from a box in the basement and announced that I would be using it to hold all future beverages.  The Beginning: When our daughter was four months old we had concerns. This baby, our second child, wasn’t gaining weight, she refused to nurse or drink from a bottle, and she wasn’t achieving the milestones associated with her age. By six months we were worried. By seven months we were frantic. Our family doctor (the only medical professional who actually listened to us), was at a loss. She ordered the necessary genetic testing, and in the meantime referred us to a pediatrician who I took Avery to see several times. On the last visit, near tears, I begged him to take our concerns seriously. My husband and I knew something wasn’t right. His response to my plea for[…]

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Do You Have Spectacula Maculas?

  Three nights ago I went a little bit blind. Friday Night after Cardio Boot Camp I logged onto Twitter and noticed that my fellow tweeters were making an LOT of typos–leaving out letters and even whole words. I felt smug. At least I wasn’t the only one who made “twypos”! Then I realized they hadn’t. It was me. My eyes were all wonky. It was looking through broken glass that had been smeared with Vaseline. My husband suggested it was eye strain. That sounded reasonable since I’d been on the computer a lot. As I was contemplating this, things worsened. I suddenly saw wiggly white lights flashing from the centre of my eyes, outward. I freaked out and ran upstairs. Not the smartest move in retrospect. The vision impaired should refrain from running up stairs. I went to bed, shut my eyes tight, and hoped I would see things clearly in the morning. If I had been having a stroke or some other medical emergency, ignoring these symptoms could have been well, not good. In the morning my vision was back to normal, with the exception of those annoying floaties passing across my field of vision. I reported this to[…]

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Do They Have HBO in Hell?

What do Spielberg’s Poltergeists 1, 2 and 3, White Noise starring Michael Keaton and the horror flick, The Ring all have in common? Creepy scenes involving a television! Growing up I was warned that T.V. was bad for me, but I thought that meant my eyeballs would implode if I sat too close. I had no idea that ghosts could burst out of the screen and that television was…evil. For years I ignored the warnings and lived dangerously. I watched Donny and Marie, The Love Boat and Fantasy Island. Sure, Donny and Marie’s relationship was somewhat unnatural, but it wasn’t “supernatural.” The Love Boat? Now what could be evil about an amorous ship? Maybe Doc was a little too touchy-feeling at times, but that’s not evil. Unless of course, he touched his patients inappropriately. And Fantasy Island? No wait, that show WAS evil. On so many levels. As I sprouted into a more discriminating couch potato, I enjoyed such non-evil classics as Silver Spoons, Family Ties, Growing Pains. The Wonder Years, and Roseanne. All perfectly pleasant and moral. Okay Roseanne could be foul at times, especially during that whole Tom Arnold spell, but I wouldn’t say she was evil (Though when[…]

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The First Seizure

How sweet she looks strapped into this retro looking wheelchair. We laughed about how it looked like a prop from the horror movie, “The Changeling.” We made jokes, but what our family had just gone through was far from funny.  Though our daughter has spent her fair share of time in pediatric wards over the past few years — always without complaint and never failing to win over the staff with her sunny disposition and ready smile — this week was truly frightening.    Though our Avery has many challenges, we try not to focus on the “what ifs.” Research tells us that many of the significant medical issues for our daughter tend to present later in life, if at all. Since Avery’s initial diagnosis we’ve had our ups and downs. Mostly ups. Doctors told us that Avery might never walk, or talk but she has proved them wrong by doing both. Tuesday however, after celebrating the great results of her perfect hearing test, things took a nasty turn. I went to wake Avery from her afternoon nap — a nap I let go on longer than usual after a long day of appointments. When I entered her room I found her unconscious.[…]

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Paging Dr. McDreamy

Our daughter had surgery today. Not a major procedure, but to me it may as well have been a brain transplant. Avery is 33 months old and isn’t talking. She has underlying genetic issues that are likely the cause, but we also know she has fluid in her ears. A whole lot of gunky fluid. She has consistently failed hearing test after hearing test. After the last one, they finally put a number on it – 40% hearing loss which is like listening while pressing both hands tightly against your ears. The result is a muted and very muffled sound. We decided to go ahead with the ear tube insertion. It would help Avery hear and hopefully speak clearly. We only hesitated because her genetic condition also includes cardiac issues which can make anaesthesia risky. We arrived at the hospital at 7 am and took a seat in the surgical waiting area with the throngs of fellow be-gowned patients. Everyone wore the same expression of exhaustion, fear and boredom. I tried not to touch anything and probably used the community hand-sanitizer more often than would be considered NOT INSANE. While we went through the pre-surgery protocol, I’m sure I kissed[…]

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