2013 - Page 14 of 18 - Forever In Mom Genes

Warning: This Post May Put You To Sleep….

Apr 09 2013

Twenty-twenty-twenty four hours to go I wanna be sedated. Nothin’ to do and no where to go-o-oh I wanna be sedated… To clarify, The Ramones want to be sedated. I do not. At all. In fact, the idea of being sedated seriously freaks me out. I’m not talking about urban legend scenarios where you’re put under at the dentist and wake up with your shirt on backwards. I’m talking about the real fear of being unconscious while somebody else monitors your breathing and heart rate. That’s some kind of scary. The only thing scarier is having to sedate your child. Especially when your child has underlying medical conditions that make anesthesia more risky. In order to perform an EEG on our daughter last week she needed to be asleep. Not fully knocked out, but soundly asleep. She also needed to be sufficiently sleep deprived to elicit the disorganized brain chaos necessary to reveal any abnormal brain waves lurking about. Our neurologist suggested using Chloral Hydrate the morning of the procedure to sedate. We’ve used this drug before without any problems. However, after doing some research into Long QT Syndrome (a potentially serious heart condition our daughter is being monitored[…]

Apr 08 2013

Have you ever looked at your child and asked, “What is going inside that head of yours?” Apparently there’s a way to find out. Just hook up them to tangle of rainbow coloured wires and take a gander at their brain waves… Avery has been having seizures since she was three years old. This is attributed in some way to her genetic disorder. Luckily for us, we have found the perfect balance of medications and outside of a few minor absence seizures, she has been seizure free for nearly two years. She was tested a few years ago and the results showed “moderate seizure activity” despite having relatively few physical symptoms. So now it’s time again; the neurologist scheduled another peek via EEG. If no seizure activity is present, he will wean her off the anti seizure meds. This is both thrilling and terrifying… “But, what if her seizures come back?!” I protested. “She’s fine on the meds. Can’t we just wait a little longer?” “We need to give her a chance,” he told me. “You don’t keep someone on medication if they don’t need it.” He’s right. I may not like it, but this is what happens now.[…]

Mar 29 2013

….mean this mother is utterly disorganized and discombobulated. It’s Good Friday—the stores are closed, the fridge is empty and I have yet to buy Easter treats for the bunny to hide on Sunday. But my family isn’t the least bit concerned. Right family?

I Don’t Care If You Stare

Mar 27 2013

Pretending to be a puppy at the pet food store… The moment I stopped caring so much about how strangers perceive my child, is the moment I was set free. I can’t pinpoint when it happened exactly, but somewhere along the road from resentment to contentment, I rediscovered the joy of parenting my unique child. I don’t mind a curious glance my way if it’s brought on by my own behaviour. If I pull out some experimental moves on the dance floor and turn over on my ankle and squeal like a pig, (hypothetically of course) an eye-roll in my direction is justified. When strangers stare disapprovingly at my innocent child however, my mama lion mane stands on end. Though my daughter appears “normal,” her developmental delays cause some decidedly odd behaviours. Errands are always eventful. Common grocery store scenario: As she furiously stuffs checkout aisle candy into her pocket, her attention suddenly turns to the man behind us in line. While tugging relentlessly on his sleeve, she announces to all within earshot that he’s her daddy (I never met the guy, I swear!). When she tires of him, she darts behind the counter to give[…]

Mar 24 2013

With so much medical and genetics related information accessible online, many parents regularly turn to the internet to research everything. If you’re the parent of a child with special needs or specific medical issues, it’s crucial to understand as much as possible about current challenges, potential problems, and helpful therapies. This knowledge is both a blessing and a curse. Our daughter has a chromosomal deletion/duplication disorder. This damaged DNA makes her susceptible to certain diseases. Incredibly, scientists have identified a number of specific faulty genes as the cause of certain diseases. We have a comprehensive list of which of our daughter’s genes are affected and after delving into the online world of genetic gene cards, we’re aware of which diseases may be looming. I don’t have to tell you how frightening this is. It’s like knowing your child will likely be in a horrible car accident in the future, without knowing when or where or how severe, yet you’re powerless to stop it. There’s nothing you can do, but being armed with information and a solid understanding of your child’s diagnosis or prognosis is essential in terms of being able to ask the right questions. Most doctors do not appreciate Dr.[…]

Archive - 2013

Warning: This Post May Put You To Sleep….

A Peek Inside Her Head

Doctors, Deadlines and Drama…

I Don’t Care If You Stare

Online Medical Research: A Blessing And A Curse