Ducky Diaries: My child will not be your guinea pig.

Monday, April 16, 2012

My child will not be your guinea pig.

We received a letter from the genetics department today.   I would like to share the end of it.   

                "Zachary's face is significant for close set eyes with a low nasal bridge and generally small nose with a bulbous tip, and a small jaw giving his face a close set appearance.  

                  Impression:  Zachary is a 9 month old with developmental delays, hypotonia, and dysmorphic features. We have discussed that we can start the genetic workup and continue with an ultrasound of the abdomen and pelvis and we will be happy to facilitate with the brain magnetic resonance imaging in any way we can. Once we have all this information it may be helpful in guiding us for other studies. "

                  First off, Dysmorphic features? What does this even mean?!   Why can't they tell you as the parent, the one that created, birthed, takes care of the child, these things.   I found out through a duplicate copy sent to our pediatrics office.  

          And secondly, other studies?   When did parents become obsolete in the medical industry?  I don't care who you are, Miss Genetics Dr., covered in facial and neck warts/tumors.  What's wrong with you!?  Why can't I as a parent butt into your life and ask why you look so gross!  What if I don't want your wart-y fingers all over my child!?    

           What if I don't want a multitude of tests ran on my child.  What if I want to give it a little time to see how he develops.  What can you offer me outside of the physical therapy that he is receiving weekly already?  

          Oh, you can offer me weekly blood drawls and tests, and M.R.I.'s, and kidney ultrasounds,   and eye doctors, and dilated pupils, and unknown diagnosis that make my heart pound and my head hurt......   

          And I can have no say in any of it whatsoever, and you can shuttle us wherever and to whoever and hurt my baby....   Sure, sign me up for another three rounds.  

        I don't care who these Dr.s are and what degree's they may have obtained over the years of schooling.  It doesn't make one iota of difference to me, bottom line, I AM THE PARENT!  This is my child.  There will be no further testing until I APPROVE!    And I happen to think that since all the tests you have signed off on, so far, have ALL come back normal and clear, you will be doing NO further testing at this point.   Mamma Bear has roared and you will hear me medical professionals.   We will give this little boy a little time to develop.  Whatever is there will be there in August when we continue with your tests.



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