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. …
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 for …
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 …
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 …
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 …
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 posterior frontal lobe along the vertex”, I …