Tags archives: Sick Kids

  • Sick Kids Mom PTSD

  • We're back home and on the mend. It was a bit of a tough transistion, getting nursing care arranged for both at home and at school and so Lily was away from school longer than we had hoped, but she went back late last week and has been as happy as they come ever since. She's had some rough moments where she has to ride[...]
  • 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[...]
  • 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[...]
  • Seeing Things Clearly

  • So Lily has glasses.  Sorry, let me rephrase that, Lily is rocking glasses.  During her eye surgery last year, our ophthalmologist was able to get a better look at Lily's eyes and after our follow-up appointment a couple of weeks ago, she told us that Lily was probably a bit near-sighted and recommended that we try gla[...]
  • 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[...]
  • 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[...]
  • No More Tears

  • Today was the first of the two eye surgeries that Lily needs to have done. We, mistakenly, thought that they were going to do both procedures at once but since that is not the plan we went ahead with the first one today - a simple tear duct probing. Lily, along with a ton of other kids, has had an issue of blocked tear[...]
  • 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[...]
  • Can You See the Difference?

  • Guys, do you remember what you were doing one year ago today? Because I do...well, kind of.  At this time, one whole year ago, I was actually pretty out of it because I had just come out of my second open heart surgery.  You see, when I was born there were some big time problems with my heart - I had something called a[...]
  • By The Numbers

  • 98582827495: the number of people in line at the Starbucks at Sick Kids today. 189: the number of days before I need to see my cardiologist again. 99: the highest my oxygen saturation levels were at today (does anyone else remember when we were happy when it was 77?) 30: the number of seconds it takes for the tech[...]
  • Oh excuse me, that's just my ego

  • Sometimes it's hard for me not to get a big head.  I mean, seriously people, I know that I'm cute.  I know that when I glance up at people and give them my squishy face smile, that people melt.  I may only be 16 months old, but I certainly know how to use my cuteness to my advantage.  The mom's say that I'm learning to[...]