Tags archives: Cardiology

  • The Faces of PVS

  • The moment that Lily's surgeon started talking is captured like a snapshot in my mind.  For me, it's the line in the sand that defined "before" and "after".  We, unlike so many parents of children with Congenital Heart Defects (CHD), knew of Lily's original heart issues, AVSD and Coarctation of Aorta; we were prepared [...]
  • #500 for 5

  • 5 years.  Since just after that horrible day 4 years ago, the goal has been 5 years.  "Take her home and grow her," they told us, "if the day comes when she needs a heart-lung transplant, the success rate improves dramatically once a child is 5."  It seemed impossible.  5 years felt more like a lifetime, especially whe[...]
  • The Amazing Constant Chaos

  • When you parent a child with special needs and any type of medical needs, you often hear people say, "I don't know how you do it."  Most of the time I just shrug it off because I don't always know either, but as a parent, you don't think about it, you just do it. However, in the past two weeks, I've started to quest[...]
  • A Challenging Post

  • I find one of the most difficult challenges about parenting a child with special needs is trying to find a work/life balance in a world where these 2 things don't always want to play nicely together.  I'm incredibly fortunate that my job offers flexible hours and it is a benefit that I value over any dollar figure.  Th[...]
  • What is Lily Looking For?

  • She's looking for number 100! 100 what, you may ask yourself? A while ago, we asked the people we love to take a few minutes out of their lives to register to become organ donors.  Originally we set our goal at getting 25 people to register.  We reached that goal and then decided to double it.  Before I knew it, ou[...]
  • Cardiac Kids

  • By being a, "heart mom", we get to see a lot of amazing things that happen on the 4th floor of Sick Kids.  The staff - doctors, nurses, OT's, dieticians, child life specialists - they all play such a huge role in making incredibly scary situations actually seem managable.  Luckily, behind them, is a group called Cardia[...]
  • A Post Full of Heart...

  • February is Heart Month - the month that celebrates love also takes a little time to bring awareness about CHD (Congential Heart Disease) to the forefront of people's minds.  Yesterday my Facebook page, twitter feed and blogrolls were all filled with people sharing their experiences - hopeful experiences.  I struggled [...]
  • Fierce

  • If, fifteen years ago, you had told me that I would be able to sit in a room, reading medical records and understand the following sentence, "loss of grey-white differentiation consistent with Hypoxic Ischemic Encephalopthy; insult occurring in the bilateral parietal, temporal, occipital lobes and occurring the the pos[...]
  • Happy Heart, Happy Birthday

  • Cardiology came and went.  They sedated, they scanned, they saw, they pronounced her heart strong and her lung pressures stable.  They said to come back in a year.  It was music to our ears. There was a moment, one breath-holding, heart stopping moment.  While Lily was conked out from the sedation (which was rare in[...]
  • Which Mom Am I?

  • When your child has a special need, regardless of whether it's a developmental disability or a medically based complexity, parents want to champion these issues: to bring their knowledge and experiences to people so that we can educate and bring awareness to what makes our child special.  My problem is that I don't kno[...]
  • Lily's New Wheels

  • There are certain specialists we see at Sick Kids that leave us less stressed than others.  I like to think of these as "maintenance" appointments - doctor's we need to see because there was an issue in the past or things that are just part of life and require some follow-up: our regular pediatrician, opthamology and o[...]
  • A Great December

  • Guys, it's a good thing that it's almost the new year, because I totally need to make a resolution that I'm going to update you all a lot more often.  Lately I've just been so busy that by the time I can sit down and write a post so many things have happened and I'm scared I'm going to forget something. First - it was[...]