Thursday, August 27, 2009

On the beginning

For some time now, I have felt called upon to share with others the journey I have been on for the past nine years.  This is no doubt a journey that will continue for the rest of my life.  I know there must be other families out there experiencing the same things we are with our eight year old son, Jason.  If my experiences could help just one other family, my son's life and journey will be that much more meaningful.

When I was 28 weeks pregnant with my son Jason, things went terribly wrong.  Bear in mind that I never experienced a normal pregnancy with Jay.  I was barely pregnant when I found out that I had Graves Disease.  This added many complications to my pregnancy and the end result was that Jason's umbilical cord and placenta never properly developed, cause him to have heart decelerations in the womb.  So, at 28 weeks and 1 day, weigh just one pound and fourteen ounces, Jason Edward Ritchie was born into this world, not kicking and screaming but in dire need of oxygen and a ventilator.

For the next 330-some days, we were in Riley Children's Hospital.  At five months, Jason got a trachea, at six months a G-tube, 10 months saw open heart surgery to repair tetrology of fallot.  And after that surgery, Jason flourished and blossomed.   He came off of the C-Pap he had been using for months, he stopped turning blue, and I was able to take my beautiful boy home just before Christmas and his first birthday.

When I left the hospital with Jay, there were Dr.'s who told me he would always need a trachea to breath, he would never eat by mouth, he would never talk, sit up, or walk.  Within 2 years, Jason was breathing without a trachea or oxygen, eating whatever he wanted and having his Mickey Button removed.  He sets, scoots, and gets around fairly well.  We still haven't mastered walking, but we're working on it.

It took these same doctors over 3 years to tell me that my son had Cerebral Palsy.  At first, I was furious that they waited so long to tell me.  Did they know what kind of other therapies I might have been able to introduce to Jay in the first 3 years of his life had I known?

I guess the reason we weren't told sooner is because Jason has a rare type of Cerebral Palsy so the doctors wanted to rule out other things before coming to that diagnosis.  He leans more toward loose muscle tone, but he isn't floppy.  I always thought kids with Cerebral Palsy were stiff and couldn't move.  I have since learned that there are several types of CP and my son has the rarest form.

I am planning this to be a place where I can share how Jason has touched not only my life, but the lives of those who know him.  I also want to give hope to other parents with a child who has been diagnosed with CP that there are so many great things we can do to help our kids live more "normal" lives.

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