Jun 25, 2012

Our Next Leg - Week 1

So where do I start? Do I start by telling you about Dylan's new home away from home, Blythedale Children's Hospital? Do I tell you about the prognosis the doctors have given to me that I listen and plan for while holding steadfast in faith to the outcome I envision? Do I tell you how much I miss her, how I miss our talks, how I miss her interactions with our family and her friends and mine? Do I tell you how the first night we spent together in Blythedale was also the first time in over a month that I actually got some rest? Where do I start?


At the beginning.  On May 13th, a bit after 10pm Dylan suffered an asthma attack - the most severe of her life.  She had a seizure, lost consciousness and was without oxygen for quite sometime.  When her pulse was regained, she was is a coma.  She was in that state for three weeks and two excruciating days.  I'll never be able to tell you what Dylan was going through during those three weeks in her deep sleep, but I can tell you that I agonized over every moment we didn't have together when I was working, she was at school, she was out with another family member or just playing in the other room.  All at once, every second was more than precious, it was everything.  I cried many times during those days remembering - almost tortuously - that she was my everything.


Each day as things progressed, my faith and hope were strengthened.  She opened her during the first week and then again the Tuesday after Memorial Day.  Things progressed a bit more quickly after that, but still at a snails pace from the outside looking in.  It seemed like nothing was happening, but the normal everyday tasks that we take for granted, Dylan was working tirelessly to at first do and then control again.  As I write this, all her organs except her liver are back to 100%.  She opens her eyes, blinks, yawns - loudly - moves her hands, arms and legs.  And now since she's been in Blythedale, she's sitting in her wheelchair up to an hour, showing signs that she understands and is trying to communicate and looks more like...Dylan.


We have a long road ahead.  We are concentrating now on her getting off the ventilator, swallowing and gaining more control of her mouth.  She'll be a busy little bee applying all the tools she used previously to be her fabulous self in a whole new way.  She'll be relearning all of the basics of being a 6 year old girl.  She'll be fighting her way back to us, back to playing with her cousin Quan, back to talking a mile a minute, back to going to school, back to not going to bed so she could read another page in her book.  Back to being Dylan.


 I'm fighting with her everyday.  I ask for your thoughts, prayers and support....and to fight with her as well.


One!

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