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Sunday, April 19, 2015

Three years ago today......

At this time exactly three years ago, I was sitting by my daughter's side in the PICU watching her chest rise and fall, hearing the whoosh of the ventilator that breathed for her, watching the various monitors that told me her vital signs, seeing the steady drip drip drip of many medications feeding into her lines.  It had been a long and emotional day and we had been quietly sitting together for a couple hours at this point.  Early that morning I had handed her over to a surgical team, they stopped her heart, they repaired her heart, and they restarted that heart.  She had some rough moments that day--when they tried to bring her off bypass, she had heartblock and came back to me with pacer wires embedded in her chest and every so often the alarms would blare, telling us her heart rate had either dropped very low or soared very high.  But she was there, she was alive, and I waited.

Today, three years later, I sit beside her as she draws her pictures on scrap paper.  She loves to draw and it doesn't matter to her if she covers the backside of a piece headed for the recycling bin or draws all over a brand new sheet of paper.  She loves ponies and transformers, cars and twirly skirts.  She wants to dance her way everywhere and hates to take a nap in case she misses anything.  She loves to cuddle as much as she loves to go outside and practice kicking the soccer ball.  She is stubborn and sweet and energetic and just full of awesome.

Happy surgeversary, my love.

Thursday, April 2, 2015

Hey, want another diagnosis?

Yesterday Iz had her results meeting for her neuropsych evaluations and we now officially have the selective mutism diagnosis her last therapist and speech therapist were discussing.  So looks like we are heading back to therapy to help her with the anxiety and the resulting behavior issues.  I was not convinced she was ready to be set free when she was discharged last year so I don't mind going back.  She seems to like the boys' therapist so maybe we'll get lucky and she'll be the one they give Iz's file to :p