Tags archives: CVI

  • #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[...]
  • Saying Thank You

  • On July 14, 2011 at 7:30am, 2 men became our family’s heroes. From that moment on it seemed incredible to me that we had barely spoken to them, didn’t know their names and never had the chance to say thank you. How was it possible that there were people just out there that had played such a huge role in our lives and w[...]
  • Ask Away

  • So clearly my attempt at {31 for 21} has been a failure of epic proportions.  I'm not sure when we October ran past me, but it did and suddenly I've woken up and there are only 13 days left in this month.  I had started with, what I thought was, a great idea - taking single posts to talk about the peices of Lily's life[...]
  • Great Big Huge Leaps

  • The last couple of weeks have shown some huge developments in Lily's developmental skills.  One of our new therapists from Holland Bloorview has just been this incredible ray of sunshine in our lives and it would be easy to chart Lily's developments alongside Catherine's visits.  We've been lucky to have some incredibl[...]
  • 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[...]
  • Looking Forward

  • The snow just keeps piling up and all I want to do is bury my body under 6 layers of blankets and my head in an amazing book, but already the sounds of September and school are starting to call. A little background here.  When Lily was first placed with us, we had found an amazing preschool, here in Toronto, that woul[...]
  • 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[...]
  • Those Genetics...

  • A mom post tonight.... It's become part of our routine to see Lily's birth parents every few months. We really enjoy seeing them: watching the expression on their faces when they see how much she has grown and what she can do.  There is something immensely fulfilling about watching her birth dad hold her for an entire[...]
  • Busy Busy Busy

  • I'm very popular here at Sick Kids and it keeps me very busy.  Everyday someone called "transport" comes and wheels me away in my bed, with Mama C trailing after us, to take me to see a new part of the hospital.  Sometimes, they get confused and don't realize that I've already been to Ultrasound or Xray, but it's still[...]